Journal History
Click here to go back to the main page.
Friday, September 15, 2006 5:54 PM CDT
September 15, 2006
Five hundred twenty five thousand six hundred minutes. A year. How do you measure a year? It is difficult to believe almost one year has come to pass since Julia’s death. In some strange way we do not want to cross over that year mark, in quite the same way that we did not really welcome 2006 on New Years Eve. It was and is a separation of time from Our Jules. I do not understand “heaven” time and speculating only seems to leave one more confused. What I do know is here on earth nearly three hundred and sixty five days have gone by without the physical presence of Jules. Even now, it does not make sense. Even now as I sit to type I cannot quite get words to wrap around the experience. Perhaps it is too big for words. Perhaps it is only for the heart, spoken in tones so delicately quiet to be honored as such.
The ebb and flow of grief. The loss of one is never one loss. Rather, it is many losses. Over and over again we have been reminded of that, in big and little ways, at odd moments and even at times when we think all is well. As May became June and the “end of the school year activities” began I quietly ached. To see all the first graders made me come face to face with the chasm of pain. The dedication of an awesome set of drums made by the Keeney PTA to the Keeney Music Department in Julia's memory, was again a reminder of what is and what is not. The music “Questions and Answers” could not have been more appropriately chosen. July brought reprieve at the beach. It is purifying and centering and good for the soul, for the soul of the family. The Quinn Family’s gesture, as well as vacation for the week reminds us of all that is good in this world. As August became September we were reminded in all of our movements of Julia’s absence. We were not getting Jules ready for school, and our traditional family school pictures show a different family this year. The crispness of the air, the gentle, muted colors of the trees hinting of what is to come, laughing children in the school yard,… it is all of Julia in our hearts but it is not ours to share with her. This is the honesty of the year. And yet, we have continued to know hope in each new day and most importantly, we have been able to continue to love Julia.
There are so many blessings in all the little regular motions of the day. I recall several years ago the joy of doing the laundry after having spent week after week in the hospital with Julia. It sounds insane but I am telling the truth. And so one of the blessing this past year has been all those mundane tasks and chores that must be done, that keeps one going, that gives one a notion of normalcy. We also have the most notable blessing of three other beautiful, energetic and healthy children who need us to love them, care for them and nurture them. On the days when my preference would have been to pull the covers up over my head the call of Kristen, Elizabeth and Jamie stretched me just a bit to do what I needed to be doing. Then, of course, there are friends and family to pull together the pieces, reminding one of the fact that life is bigger and there is room for more love, more joy and more hope in life.
There is so much about Julia that we miss. That is the truth. We miss her, every morning, ever afternoon, every night. Everyday. That old adage about “time healing,” well, thus far it is more misleading than true. Time changes the ache but the ache does not go away. I did not understand that a year ago but talk to any parent who has lost a child and the look in their eyes when they speak of their child tells all. None of this is a call for pity. My goodness, if anything it is a call for understanding. Understanding of life and what is important. Understanding of how our actions affect others. Understanding that life really is precious, relationships fragile and the call to “do the right thing.” Mend those relationships, don’t let stupidity stand in the way, reach out, be kind. Love.
The phrase that will forever resonate in my head is “God is always faithful.” Admittedly, understanding and holding that in our hearts has been a stretch this year. But it has been what we have clung to. Those questions continue. The answers slow to be recognized. But we believe it. Though we haven’t quite been able to articulate it or perhaps always be aware of the faithfulness we know there it sits waiting for us to be ready. Ready to accept it. Ready to move forward. Ready to welcome joy with open arms. But there have been hints of it.
Last December Jamie got a little paper route which I have committed to helping him with. (I guess, "we" got the paper route is a more accurate description.) It has been a joy to see the boyishness of our ten year old. There are rocks to kick, sticks to pick up and steps to jump over. There are days to race through the route and compete against time and ourselves and there are lazy days when we are just in no hurry. But it is us together. Or it is Jamie and Jay rising early on Saturday mornings, grabbing coffee and a muffin and setting out to do “the job.” It is us seeing and being with Jamie in a way we just were not able to before. In his own gentle way we know Jamie misses his Jules. We see it in his eyes at the mention of her name and sometimes more at what isn’t said. The words can be too hard.
Elizabeth has become a beautiful young woman this past year. At just thirteen, it is clear she is as bright,. as she is beautiful. She is fraught with all those thirteen year old traits, ahem, which we will not get into. But we have seen it all happen before our very eyes. We are reminded that the independence that a teen struggles for is sometimes matched with their need for us. Occasionally, we get it right and the rest we chalk up to her being a teen (and us “not knowing anything.”). But we have come to know and understand that the loss of Julia in Elizabeth’s life runs deep, as it does in all us. She does not want to take Julia’s bed out of her room, nor all those sweet little girl dresses that belonged to Jules. They still hang in the closet somehow offering a bridge between “here” and “there.” She is “not ready.” We have chosen to respect that and at times are even grateful because on most days we’re not ready either. In time.
Kristen. She is as energetic as she kind and beautiful Her journey into young adulthood has been an incredible patchwork, as colorful as Kristen herself. We are so proud of how she treats other people and reaches out with kindness and intention. At school she has made it her priority to be friendly and inclusive of those with special needs. Her heart is big. As a junior in high school, we are well aware that her time home here is winding down. She is so very caught up in her high school days running with the cross country team, going to pasta dinners, cross country meets, the football games and of course, being a great student. It is a special time in her life that we have promoted. Have fun, enjoy, laugh. It is good to see her so genuinely happy.
For Jay and I it has been a year of taking deep breaths, breathing slowly and at times feeling triumph in just making it through another day. We’ve managed. We’ve plugged along. Sometimes we’ve even done extraordinarily well, believing we were through with the anguish and grief, only to be brought back by an arbitrary something. An arbitrary anything. We have gathered one another in and I know we are both beyond thankful for the other. But at times we have also understood the stress of needing to grieve differently, of perhaps not knowing quite how to make our world work the way it used to. It will never work quite the way it used to. As we approach our own anniversary, we are reminded that this is indeed what marriage is about. Trying. And trying again. We are committed to that, and to one another.
So again we continue to live life in the best way we can. We look to faith, hope and love. Again. Again. And there again. We look to and through the pieces of our life with Jules that nourished us. We look to honor her life, while recognizing the need to move in positive directions with our own lives. We look ahead with wonder and back with gratitude. The tapestry, our tapestry, of life together continues to take shape and form as our lives unfold. We know it will be okay.
Love and Peace,
The Moran family
Wednesday, April 12, 2006 2:00 PM CDT
Dear Friends,
As time has come to pass I know that I want and need to end this website. (I have just been vetoed by the entire family…and who does the writing?) It has been for us, an incredible venue for keeping friends and family posted on our journey of life with Jules and even her death. It has also been a way to let go of all that is in our heads and hearts, making sense of what oft times has seemed so senseless. The plethora of support has been so inspiring and time and time again you’ve brought us back to where we need to be; living a life of faith and hope, even in Jules death. For that, for your munificence of support, given so lovingly, we will always be most indebted.
We knew that this leg of the journey would not be easy. The constant presence of Jules absence is very real and renders our hearts to desperation from time to time but we are also aware of the very incredible gift we have received, on so many levels. Like most, we have sought meaning in our experience, believing somehow that if we only knew the reason it all had to happen then we would know exactly how to live life. Unfortunately, it is not black and white. Questions persist. Answers elude us. And so we continue to do the best that we can, which often seems feebly inadequate. We try to live in a way that speaks of love, and care and compassion for our fellow human beings but even at that we know it is all so much bigger than us.
February 24th marked six months. April 20th will be what should have been Jule’s seventh birthday. But I was never able to imagine her being seven. She was too sick. I couldn’t quite understand how she could be seven and not do any of the things other seven year olds could do. I remember just a year and a half ago Elizabeth’s realization that Julia would not ever know her abcs, read or know simple math. The look of utter disbelief and grief. I thought she understood that and in her innocence she missed it. I remember writing on the eve of Julia’s sixth birthday: the hives, the breathing treatments, the eczema, the seizure. In retrospect, it all collectively pointed towards life gasping for life. But it had become normal and I’m not sure we really grasped what we were headed for soon. We found shelter within one another and together became resilient. We wanted to do this. We wanted to do it, for Jules, and one another, in faith and with grace.
There is a need and desire to “celebrate” her seventh birthday. I hope that doesn’t seem maudlin or macabre. I know we need to do what we need to do, despite the thoughts or perceptions of others. Jamie, Elizabeth and Kristen have suggested that we keep our annual to trip to the UCONN Farm on board. My goodness, they remember me 9+ months pregnant and going there the day before Julia was born! And they remember each year thereafter when we went there (except for the year we were in Disney). I love them for their incredibly sensitive suggestion, love them for knowing that is the perfect thing to do! Jamie piped in that we should go out to dinner together in her honor because we have done that in the past as well. Looks like the day is better planned than I anticipated. Six birthdays. I could proclaim what we did on each, who came, what the theme was and what Julia’s state of health was on each of these very important milestones in her life. We knew. We knew to hold dear to each birthday and all the days in between.
Around our home glimpses of Jules prevail. Little by little we have squirreled away parcels of what makes us feel close to her. I haven’t done it all, as if I can keep her close by keeping out certain dresses or a stuffed animal that she so often snuggled with. There is resistance in letting go, resistance in packing all her things and putting them away. We like having her with us, we like having that which reminds us of her. But gradually, we are transforming the Jules that was with us physically to the Jules that’s with us spiritually. A “Julia Candle” burns brightly during family moments and occasions. Special pictures continue to make themselves known and seemingly find new homes out of drawers and boxes onto our shelves and walls. So many moments, so many precious times and they have not been lost. Another reason to be entirely grateful.
But how are we doing? It is and has been the most asked question these past six and half months. Sometimes I am not sure how to answer that question. In any one day any one of us can go through a gamut of emotion…spiraling towards a place of happiness or conversely depression (yikes, five people and five distinct personalities!) But brought into focus I think we are still very much like any other family, grappling with day to day issues and dealing with the general dynamics and interaction of family. I think we’re normal! (Yipee!) I think the space of Jules exists and we are learning to live with that space in the best way that we can. Life has gone on. We’re dealing with it. In fact, in some ways we are blossoming. Each in our own small way has found a space and freedom to be more of who God wants us to be. That part is exciting, learning to not be guilty about that has been the more difficult aspect.
The grace of Jules in our life is beginning to present in so many ways. Kristen, just two years away from entering college is looking into becoming a nurse or working in the medical field somehow. She says that it is a direct result of life with Jules. Jamie and Elizabeth are much further from the college scene but I see the crux of their lives stemming from their sister. The gift, that keeps on giving. Jay and I are hopeful that we will be goodwill ambassadors for the Children’s Hospital. Last November we met with and formulated a loose plan of how we might be helpful to the hospital that served our family so well for five years. I will continue to orchestrate “Blankets of Love” with Lisa and am hopeful that we can expand it to other churches, offering the hope and prayers to those who may feel hopeless. On Monday, Jay and I went to Sarah Lawrence College to speak with genetic counselors and peeps in the medical field about our experience with Jules and how people in the medical profession can be most helpful to families in medical crisis. Thus, our experience may actually prove to help others. And that’s what we wanted. That’s what we hoped for. That all of this take on meaning and give life in some way to others.
As the seasons change and Father Time pushes us forth we are beginning to recognize, once again, the blessings that are ours. It isn’t always easy. But the belief that God is in our corner brings with it peace, the ability to move beyond our own experience and hopefully, touch some other life in need. During this Easter season may we all look towards new life and know hopefulness no matter our life circumstances.
Happy Easter!
Happy Birthday Sweet Jules!
All our love,
The Moran Family
PS If you made it this far, you are definitely an angel in our life!
Tuesday, February 14, 2006 7:23 PM CST
"I have called you by name, you are mine, I will be with you because you are precious and glorious and because I love you." Isiah 43:1,2,4
It is Valentine's Day. For us a day with many connotations and associations far beyond the commercial box of chocolates. Love. We think we get it in big and little ways. And we know you too know love, just as clearly, but in a way that nourishes your own life existence. In the end isn't it what we all want and desire most? To love and feel loved? A common truth.
The days and weeks have taken on their own cadence. Jay and the kids seem to have it down pat. Off to work or school and activities. I am just a bit envious, aware that I have not given myself completely to any one venue but appear where ever life seems to need me. I have resisted the urge to dive head first into anything because truthfully it would be for all the wrong reasons.
The space in our hearts for Julia does not seem to go away. We have been told by those with more knowledge and understanding that it will not go away but that sadness and joy will learn to coexist, but not yet. The wisdom of another lets us know to not try to fill the space because it belongs to Julia. The space is Julia. The sadness and memory of her sweet self lives there. For those who do not know loss my words may seem odd or a bit dramatic. But for those who have experienced loss it resonates and within you there also remains a space.
We are a society that rushes through this sadness, anxious for life to resume to normal, uncomfortable with it, not quite sure what to do with it. (Guilty!) but I have found that we must honor this time for it will be time and over time that we will come to know and understand our loss, be comfortable with it and still know a God that loves us. Our life has but a simple distinction. Life with Jules, life without. With time, that too will change.
Our day began with a simple "I love you" and it will end the same. In between we manage all the regular stuff that makes up our days with a few extras (some yummy cookies, pathetic jigglers and uh, okay, some of those commercial chocolates.) We will all spend a few moments with Jules, unbeknownst to one another, as well as a few moments together. The balloon with a simple "I love you" launches into the sky, higher and higher towards the heavens. Somewhere, she knows. And we know too...
Happy Valentine's Day 2006
xo
The Moran Fam
Saturday, December 24, 2005 12:05 AM CST
Dear Friends,
As Christmas morn creeps in upon us we have found ourselves doing more hesitating than anticipating. It has been a month of "Jules moments" and forging ahead with the cheer of the holiday spirit has not quite been in our hearts. And yet, inside the space of sorrow there begins something anew this Christmas Day.
Though two thousand years have passed we're not that far from Bethlehem.
The invitations this season to think of you, to hope for you and to miss you, abound. In our quiet moments we know you are there. In the smile of a sweet babe, the gentleness of a friend's touch or the echo of some meaningful song. Life's rhythm continues and so do you in perfect harmony.
We're not that far from Bethlehem.
And we remember those who also know sorrow this year. We are not alone, nor misunderstood. For there is something about both new life and death that binds the human family. As if God is reminding us that we are all in this together. Gently reach and you shall find a hand ready to hold yours.
Though two thousand years have passed we're not that far from Bethlehem.
We search the sky for that shining star, knowing the hope and promise will be found. Where all our hopes and joys begin, we're not that far from Bethlehem. Though two thousand years have passed, we're not that far!
We're not that far from Bethlehem.
May you find your heart anew this Christmas Day!
With Love,
The Moran Family
PS- "We're Not That Far From Bethlehem" has been our song this month and has inspired some of the words for this piece.
Friday, November 4, 2005 2:09 PM CST
And so the life of “Our Jules” has come full circle. A life full of love and the indelible mark of God given to her to share. We do not pretend to understand any of this and questions to, through, and of God remain. Though we do not understand, there remains a knowingness of the many, many people who have walked the journey with us in faith, hope and love. Please do not ever underestimate the power of that. For us it was bread and water. Sustenance, for life itself these past six and half years.
I am unable to say, nor do I want, to share all that is in my heart at this time. Moving through these past few weeks has been like navigating without a map in foreign territory. But we are finding our way, slowly. The finality of Julia’s death is hard to take in and it remains harder to understand what were suppose to do next. But in the big picture we are hopeful of honoring her life in some way that speaks of the love she resonated so beautifully with. She’s changed our lives, as well as, the way we think about others and through this experience we have been shaped and formed to do good things for humanity, though we don’t quite know what that “something” is.
The many “firsts” have been woven with a feeling of melancholy. We are a family of many traditions, silly, though they may be. For birthdays, it is a special song we sing to one another which originated with Julia. As we tried to sing to Kristen, the first family birthday without Jules, the grief and sadness was palpable. We were so bad at trying to sing through tears that we actually laughed in spite of ourselves. At Halloween there was no costume to figure out for Julia. It may sound trite but it’s what we have always done each year and to not do so was to only come closer to our loss. Next week we had planned to tag along with Jay on his business trip to Florida. We had done so to further the family bond of fun and togetherness while we could, not knowing that God and Jules had other plans.
And now we begin a new journey. A journey with Jules in our hearts and never far from our thoughts. We hope that in some small way that Julia might have touched your own life and that you may carry that in your heart. Thank you for walking the journey. It has been long and tiring, but good and blessed. Together we did it and along the way found the many treasures of faith, hope and love. Thank you, Julia!
We love you all!
XOX
The Moran Fam
Wednesday, October 12, 2005 8:01 AM CDT
Dear Friends,
Below we are sharing Fr. Joe's homily for Julia's mass. The mass was just a beautiful time for our family to celebrate and honor Julia. In days to come perhaps I will rally and have a bit more to say but for now let this tribute stand on its own. xo The Moran Fam
OF JULIA
Today as we gather to celebrate this sacred moment I am reminded of the many sacred moments that shaped Julia Moran’s life and that took place here at St. Bridget’s. Throughout her life this holy place has been for her and for her family a place of prayer, celebration, blessing, healing and new life. In particular three occasions come to mind.
On June 27, 1999 Patty, Jay, Kristen, Elizabeth and Jamie brought Julia here for the first time to be baptized. Unaware at that time of the unique journey of life and faith that would be hers and theirs, they brought her not only to celebrate God’s love and faithfulness to her for the first time, but also to make her part of a larger community and family of faith. She would in a brief time take a special place in that family of faith and draw more and more people in that family to a deeper awareness of God and God’s love at work in this world. And in turn the faith of that community would shed light and perspective, strength and hope upon the path that her life was to take.
Again on October 14, 2000 Patty, Jay, Kristen, Elizabeth and Jamie brought Julia here for another celebration of faith and community. By that time they had become aware of the disease that would deeply affect her life and theirs. Hurler’s disease would mark her life but the mark of baptism would far surpass it in the power it would have over her and her family. And so on that eve of their journey to Minnesota for her bone marrow transplant they brought Julia here so that the community of her family and friends could pray the Sacrament of the Anointing of the Sick for her and solemnly bless her and her family on their way to what would be a unique chapter of their lives. That night is remembered by those of us who were here as a particularly intense and powerful prayer that coupled with the celebration that followed in the auditorium vividly expressed the life, the faith, the love and the hope we all had for Julia.
Today, September 28, 2005, we come together here once again and this gathering flows directly from the celebration of faith, life and community on those previous two occasions. Today’s prayer speaks again and again of the celebration of Julia’s baptism and all it means for her especially now. Clothed with the white pall symbolizing the white robe of baptism and sprinkled again with baptismal water we express in our ritual prayer our firm belief that Julia belongs to God, that she is loved deeply by God and that now she is embraced by God. And we believe that the God who through Patty and Jay loved Julia into existence over six years ago now is fulfilling the promise he made to her and to them at her baptism. God promised to be faithful to her and to them in ways that were hidden from their eyes on her baptismal day, but which are so apparent today to them and to all who shared her journey. The faith in which Patty and Jay had been raised and which had been so important to them became an essential part of who Julia became in her short span of years. In good times and bad, in sickness and health until death God’s faithfulness was apparent and leads us to believe that God continues to be faithful to her and to us even now.
And God worked in God’s own way: through the life, the faith, the skill and the concern of others many of whom shared not only the night of blessing in October of 2000 but who pray together here today.
• By far the first among them are Patty and Jay. When sixteen years ago you promised, again in this same holy place, to be true to each other “in good times and bad, in sickness and health until death” you could not possibly have known what those words would mean for you and for your love for each other. How generously and courageously you have been faithful to those vows and that faithfulness has been a source of life and hope not only for you and your children and especially for Julia but also for countless others of us who have walked along this journey with you. I recall how once it became apparent that Julia’s bone marrow transplant had not been successful that you decided you would give her the fullest and most normal life possible. You did it and you did it extraordinarily well. Her life at home with all of you, her life at Gronda and Moran family gatherings, her life at school with other children, her vacations and her life as part of this parish community were unselfconsciously normal. Remember the time she lead the children’s Palm Sunday procession in my arms! You made that all possible. What a gift of love and faithfulness!
• And none of it could have happened without the love of her big sisters and brother. Kristen, Elizabeth and Jamie formed a bond with their little Jules playing with her, hugging her, taking care of her, reading to her, including her in their activities and their friendships. Traditionally big sisters and brothers guide and protect their younger siblings. The guidance and protection you gave to Julia was marked by your deep love for her and she in turn loved you back. I suspect that as you grow up her love will always mark your lives. You will be different, more loving, compassionate and understanding people because of your little sister and her unique life journey. What a special blessing you were for Jules and she was for you!
• Grandparents, aunts and uncles, and cousins formed an extended network of love and faithfulness as they made her aware that she was part of larger family. And that network extended even further to the many other family and friends who went out of their ways to accept, love and care for Julia as their own. Her “Hope for Julia” website abounds with the reflections, prayers and support of a network of people too numerous to mention or even imagine. Her person and her story have been a powerful blessing for so many of us.
• The medical staff and personnel of Connecticut Children’s Medical Center played a special role in Julia’s life. They went well beyond the boundaries of professional care to actually becoming part of her family as she became part of theirs over these past years. And an added blessing was that so many of them were at the hospital last week. Those who work with children who have special needs are among the most heroic members of the human family and the CCMC staff stands tall among them.
And so we come here once again immersed as we are in the powerful and sacred experience of these past six years with Jules and once again we pray. This prayer of remembrance, gratitude and faith is intense. It expresses faith. It is charged with deep emotion. It offers comfort. It raises questions. It renews hope.
• It proclaims that despite all we do not understand about Julia’s life that God is a God of love and faithfulness.
• It proclaims that no matter how distant God may feel that God is always near especially when needs are greatest.
• It proclaims that nothing, not even Hurler’s disease, can ever separate us from the love of God that comes to us in Christ Jesus.
• And ultimately it proclaims that Julia lives forever in God and in those who have loved her.
One final point. People often ask what heaven is like. We believe tat no one but Jesus has experienced it and come back to describe it for us. Literature, theology and home-spun wisdom have often attempted to describe it. But the other day as they drew to the end of their faithful vigil with Jules at the hospital Jay and Patty explained it in wonderfully meaningful terms to Kristen, Elizabeth and Jamie. They said that now Julia can see and hear, run and play, talk and laugh again. There are no more surgeries, no more hospitals, no more needles and no more illness. It is as if God has somehow read your desire that Julia a full and normal life and “on that holy mountain” God has given it to her in abundance. I don’t know about you but I find that image to be so consistent with all that we believe and all that we celebrate here today.
May this third sacred celebration here of Julia’s life leave her mark and its mark on us.
May it draw us to be more open to God and God’s life and love working in each of us.
May it attract us to take greater advantage of God’s insight and nourishment in Word and Eucharist and in the community of faithful believers.
May it free us to allow God to empower us to sincerely and generously care for others as we have cared for Julia.
And when we do so may we discover that we are more in touch with Jules and with that rich and full life God wants for each of us.
Sunday, September 25, 2005 3:38 PM CDT
The gentle and loving arms of Jesus welcomed home Julia Jean Moran, 6, of Manchester on Saturday, September 24, 2005. She was surrounded by her loving family. Born on April 20, 1999, her courageous and inspiring battle with Hurlers Syndrome touched the lives of all who met her. A gentle spirit, Julia’s sweet smile, infectious giggles and warm hugs will live in our hearts forever. Julia leaves behind her parents, Jay and Patty (Gronda) Moran of Manchester; her wonderful and caring big sisters Kristen and Elizabeth, and her brother and best buddy Jamie; also her maternal grandparents Jean and John Gronda of Manchester, her paternal grandparents Robert and Barbara Moran of West Haven. She is also survived by her aunts and uncles, Elizabeth and James Michalik of Knoxville, TN, Stephen Gronda of Glen Cove, NY, Richard Gronda of Seymour, CT, Teresa and Michael Soltys of Southington, CT, Robert and Kelley Gronda, of Chevy Chase, MD, Robert and Tracy Moran of Cheshire, CT, Timothy and Deborah Moran of West Haven, CT and Thomas and Norma Moran of Cheshire, CT; also many adoring cousins, great-aunts and uncles and friends too numerous to mention. Julia’s family acknowledges and is deeply grateful to the Doctors, Nurses and staff at the Connecticut Children’s Medical Center for their care and commitment to the life of “Our Jules.” Funeral service will be held on Wednesday (September 28, 2005) at 9:00 am from the John F. Tierney Funeral Home 219 West Center St. Manchester, with a Mass of Christian Burial at 10 am at St. Bridget Church, Main St. Manchester, followed by burial in Holy Cross Cemetery, Glastonbury. Family and friends may call at the funeral home on Tuesday from 4-8 pm. In lieu of flowers, memorial donations may be made to Connecticut Children’s Medical Center Foundation, Inc. 12 Charter Oak Place Hartford, CT 06106.
Wednesday, April 20, 2005 8:16 PM CDT
Dear Friends of Julia,
Ohhh, a blank page and soooo much to write! I've avoided, put off, procrastinated and thought of ending it entirely. Yes, I'm talking about Miss Julia's website. But on a special day like today I am grateful for the keyboard and a blank page to jot but a few thoughts about the life of a very special Miss Julia. (Those who know me, know the "few words" part is a lie.)
The months have gone swiftly by and the whirlwind of Julia's physical wellbeing has continually kept us on our toes. So much so that I began to dread sharing another piece of news that wasn't laced in optimism. The white and the black have begun to smudge, making the sharing a bit more difficult. We're not always even sure what we think and find ourselves feeling vulnerable to what anyone else might think. It has seemed we have filled these pages with total honesty and when we became unable to articulate with that same honesty it was time to stop.
Our most difficult issues revovled around "spells" Jules began having in late December. They lasted ten seconds or so and seemed to be somewhat suspicious of being a seizure. We were not anxious to put Jules on new medication and so in agreement with the doctor we chose to wait until something really presented. Well, they presented alright. Each week the number of "spells" doubled in number and length of time until we were dealing with 5 to 7 minute seizures fifteen times a day. In the middle of it all you just deal with it and it unfortunately becomes a new way of being with Jules and being a family. Any freedom or security we felt we had gained up to that point was gone. Putting her on meds was a turning point. However the drug needs to reach a therapeutic level in the blood before it is very helpful. Now after seven weeks of introducing the drug and increasing it incrementally weekly we are now seeing its positive affects in subsiding the majority of seizures. Amen!!
Our weekly trips into CCMC for Enzyme Replacement Therapy are about to end. Yippee! Actually the weekly infusions will not end but as of next week we will do home infusions every other week and on the off weeks we will go CCMC. This arrangement frees Julia and I up a bit on Tuesdays and yet it lets us maintain continuity and continual contact with Dr. Greenstein twice a month. On the weeks we have home infusion, Julia's nurse, Maureen, will come here to care for her. Perhaps in the future all our infusions will be at home but for right now Julia and I both need Dr. Greenstein and the hospital as a touchstone for all her health needs.
Julia's overall health has been okay. There are times when I feel we are chasing one need after another. Last night, on the eve of Julia's sixth birthday the pangs of her health issues weighed heavily. Her arms and legs are covered with eczema and so I cream her down. I noticed her belly covered in hives and so I add 6 cc's of hydroxizine to her nightly regime. Her breathing was raspy and so I gave her an albuterol treatment. Her evening was topped off with a seizure. Not exactly the way anyone anticipates a sixth birthday party. If I spent anytime feeling sorry for myself or Jules our other children snapped me out of it.
"It's the eve of Julia's birthday! Mommy, you need to tuck Julia in on her last night of being five." Okay, we have this silly tradition on birthday eves that I make a big deal out of tucking them in for the LAST time being "x" years old. It was Julia's turn and they weren't going to let me off the hook. We tucked our sweet five year old in for one last time, there were plenty of hugs and kisses. On April 20th she would be six!
The sun came up and our sleepy six year old just wanted to sleep. Her dad got her up enough to tuck her into bed next to me. As I gently watch her sleep I cannot help but reflect on where we've been these last six years. This day is truly special. Jamie comes in and smothers his sister in kisses, hoping she'll awaken. We use the time to make her a cake...angel food cake, of course.
Six years and one day ago we made a trip to the UCONN farm.
We made the trip again on Julia's first birthday and yes, that is where we chose to go today as well. Both Jay's and my alma mater, there are so many memories there and it is fun to weave UCONN into our childrens' lives as well. It was simple and low key but seemed to fit with the celebration we needed today. To be together, to know that today is Julia's day and to understand the gift that she is in our lives. Thank you, Julia. Thank you, God.
Happy Sixth Birthday to our Sweet Jules!!
Love,
Patty and the rest of the gang
PS Thank you Johan, Lisa, Joanna, Amy, Klane, Madeline and Susannah...I needed a kick in the keister!
PSS May 14th fun run in Julia's honor, proceeds to benefit CCMC. Stay tuned for info!
Wednesday, April 20, 2005 8:16 PM CDT
Dear Friends of Julia,
Ohhh, a blank page and soooo much to write! I've avoided, put off, procrastinated and thought of ending it entirely. Yes, I'm talking about Miss Julia's website. But on a special day like today I am grateful for the keyboard and a blank page to jot but a few thoughts about the life of a very special Miss Julia. (Those who know me, know the "few words" part is a lie.)
The months have gone swiftly by and the whirlwind of Julia's physical wellbeing has continually kept us on our toes. So much so that I began to dread sharing another piece of news that wasn't laced in optimism. The white and the gray have begun to smudge, making the sharing a bit more difficult. We're not always even sure what we think and find ourselves feeling vulnerable to what anyone else might think. It has seemed we have filled these pages with total honesty and when we became unable to articulate with that same honesty it was time to stop.
Our most difficult issues revovled around "spells" Jules began having in late December. They lasted ten seconds or so and seemed to be somewhat suspicious of being a seizure. We were not anxious to put Jules on new medication and so in agreement with the doctor we chose to wait until something really presented. Well, they presented alright. Each week the number of "spells" doubled in number and length of time until we were dealing with 5 to 7 minute seizures fifteen times a day. In the middle of it all you just deal with it and it unfortunately becomes a new way of being with Jules and being a family. Any freedom or security we felt we had gained up to that point was gone. Putting her on meds was a turning point. However the drug needs to reach a therapeutic level in the blood before it is very helpful. Now after seven weeks of introducing the drug and increasing it incrementally weekly we are now seeing its positive affects in subsiding the majority of seizures. Amen!!
Our weekly trips into CCMC for Enzyme Replacement Therapy are about to end. Yippee! Actually the weekly infusions will not end but as of next week we will do home infusions every other week and on the off weeks we will go CCMC. This arrangement frees Julia and I up a bit on Tuesdays and yet it lets us maintain continuity and continual contact with Dr. Greenstein twice a month. On the weeks we have home infusion, Julia's nurse, Maureen, will come here to care for her. Perhaps in the future all our infusions will be at home but for right now Julia and I both need Dr. Greenstein and the hospital as a touchstone for all her health needs.
Julia's overall health has been okay. There are times when I feel we are chasing one need after another. Last night, on the eve of Julia's sixth birthday the pangs of her health issues weighed heavily. Her arms and legs are covered with eczema and so I cream her down. I noticed her belly covered in hives and so I add 6 cc's of hydroxizine to her nightly regime. Her breathing was raspy and so I gave her an albuterol treatment. Her evening was topped off with a seizure. Not exactly the way anyone anticipates a sixth birthday party. If I spent anytime feeling sorry for myself or Jules our other children snapped me out of it.
"It's the eve of Julia's birthday! Mommy, you need to tuck Julia in on her last night of being five." Okay, we have this silly tradition on birthday eves that I make a big deal out of tucking them in for the LAST time being "x" years old. It was Julia's turn and they weren't going to let me off the hook. We tucked our sweet five year old in for one last time, there were plenty of hugs and kisses. On April 20th she would be six!
The sun came up and our sleepy six year old just wanted to sleep. Her dad got her up enough to tuck her into bed next to me. As I gently watch her sleep I cannot help but reflect on where we've been these last six years. This day is truly special. Jamie comes in and smothers his sister in kisses, hoping she'll awaken. We use the time to make her a cake...angel food cake, of course.
Six years and one day ago we made a trip to the UCONN farm.
We made the trip again on Julia's first birthday and yes, that is where we chose to go today as well. Both Jay's and my alma mater, there are so many memories there and it is fun to weave UCONN into our childrens' lives as well. It was simple and low key but seemed to fit with the celebration we needed today. To be together, to know that today is Julia's day and to understand the gift that she is in our lives. Thnak you, Julia. Thank you, God.
Happy Sixth Birthday to our Sweet Jules!!
Love,
Patty and the rest of the gang
PS Thank you Johan, Lisa, Joanna, Amy, Klane, Madeline and Susannah...I needed a kick in the...
PSS May 14th fun run in Julia's honor, proceeds to benefit CCMC. Stay tuned for info!
Wednesday, August 18, 2004 11:14 PM CDT
SURPRISE!!!
I'm back!
Your gentle chastisement, as well as my own embarrassment for leaving so much "undone" prompts this writing. It has been months, literally, since I've updated and I know in my heart that there has been just too much to share, perhaps some that I just don't want to share and much that you'd probably rather not know. But for those of you who have been steadfast in your committment to Julia's wellbeing and this website I remain in awe. I hope the brevity of my writing will not undermine or narrow the journey of the past four months in Julia's life. (I've just finished writing and believe me it's not brief!)
Disney World proved to be an incredible, uplifting experience for the entire family. We stayed in a wonderful village called "Give Kids the World" run entirely by volunteers who seem genuinely committed to making ones stay totally magical. The village boasts a mini golf course, a carousel, a castle, gingerbread house, an icecream parlour (where you can have icecream whenever you want it,)fishing and Mayor Clayton (he's a six foot rabbit.) Families who stay at the village all have a child with a life threatening disease. To be surrounded by the gentle love and generosity of so many volunteers is so humbling. To be with so many other families clued into life with sick children is heartbreaking but you won't see any tears this week. Each "wish" will be fulfilled beyond the imaginations of any of these families, ourselves included.
Our days at Disney are magical. One could not help but smile, laugh and find oneself caught up in the whimsical. Jules is a guest of honor wherever we go. She is just delighted by all the attention and our days stretch out far longer than I dreamt possible. We are granted front of the line passes for everything from rides, shows and picures with the characters. Imagine the delight of my children at getting back stage passes to be with Beast and the Beast up close and personal? My goodness, we were treated like royalty (and yes, it was a bit embarrassing at times.) Though time and space preclude me from detailing all our memorable moments there is one very special one I would like to share, Julia's fifth birthday. What could be more magical? After spending the day at Animal Kingdom (because Jamie knew this would be Jule's favorite) we head back to Magic Kingdom for dinner with the characters and our good friends, The Posts (oh yeah, they could be counted as characters!) Julia is wearing a khaki dress with red, white and blue polka dots emblazoned with Mickey and Minney. The bands kick up the music for the parade and there on the horizon is the magnificent castle. Jay gently lifts his birthday girl and there they dance. It is an unforgettable moment. We are so grateful for this day!
April moves swiftly into May but not without heartache. Julia's sleep study test is beyond bad, it's severe. Some of her doctors suggest measures that boggle our mind and heart. Though we are fully cognizant of the tribualtions Julia will face healthwise we were not ready for weight of their words. April and May become a time of seeking answers and asking more questions.
We are caught off guard by an invitation to a family weekend at "Hole in the Wall Gang Camp" by CCMC but have the entire weekend open and accept. We are delighted to be there with the Quinn Family who know firsthand what Hurlers is all about. We are also graced with the presence of another family who we spent many long days with at CCMC.
There are many other CCMC Families there as well and we are joined with several of Julia's nurses and Dr. Gillan. We have an incredible weekend, just incredible and while I won't detail our every move our family unequivocally states it was as fun as Disney. The weekend culminates with a show by children and/or parents on stage. Jay and Jules left nary a dry eye singing "Can You Feel the Love?" by Elton John. It was a WOW moment for the 70 or 80 people present.
Moving right along into May...I've had my eye on a conference out in Minnesota specifically directed at the breathing airways and sleep apnea of MPSI children. Having just found out that Jules has some major issues Jay and I plan on attending. Okay, I know I sound redundant here (and maybe even insincere) but it turns out to be another incredible weekend. Charlie Peters (Jules MN doc) is instrumental in making sure we have the opportunity to talk to the right people. Not only is this portion of the conference dedicated to Julia we get a private round table with four or five internationally renowned doctors to discuss Julia's issues specifically. I'm happy to report that everything that is said here has been said by our own CCMC doctors. I know were on the right track. The choices are there, the decision to do what is right and best is ours to make.
In between workshops we return to the Ronald McDonald House
to offer personal thanks for our time spent there. As strange as it sounds, it was good to go back. Our days at the Ronald McDonald House were utterly transforming for our family and though it was a time of great distress I cannot think of a time we were more grateful. Our committment to support other families on a similar journey is once again affirmed.
Minnesota would not be complete without meeting up with our Hurler Friends. We are delighted to spend so much time with the White Family and to be with so many others who share a legacy on the Hurler Family Tree. We spend time comparing stories, our triumphs, as well as our hopes and dreams for our children. Our stories differ and our children though one as sweet as the next are all unique. It is a blessing to see so many success stories! WOW!
May becomes June...Jay is offered a job at the University of Bridgeport as their Director of Athletics and accepts.
Though the drive seems a bit ominous we're going to try it our for a bit and see how things go.
June, July, August...it's summer. It is one of the busiest summers I can remember, a good busy. Weekends away as a family and time away with friends, beach time, ice cream time, swim time, time with special friends, dinners and pizza parties. Summer is good! Life is good!
As I write I am aware that summer is slipping away. Those scheduled days of rushed mornings and afternoons of homework are just about here. Julia's big news is kindergarten, yes, kindergarten! Our even bigger news is that she'll be attending our very own Keeney Street School! Another WOW moment!! Four mornings a week she'll head off to Keeney mainstreamed into their kindergarten program. Mary (# 1 nurse and most awesome one to one) will accompany Jules each day, providing all the support she needs. Very proud bro just can't wait to see his little sister at his school! The girls are just as pleased that Julia will be a Keeney Cub! A big thank you to Frank Amara (Keeney principal) for his enthusiasm and committment for getting Julia to Keeney.
Finally, despite doctor reports on Julia's apnea and breathing airway issues we believe she's doing great. A prophylatic antibiotic has prevented her nose from running continuously and we are seeing a happier, more energetic little girl. Julia continues her ERT and its affect boasts a heart that is functioning pretty normal for a five year old (no leaky valve and a reduction in the thickness.) In regard to ERT we are actually contemplating trying the infusion every two weeks and see if we can maintain what we've attained already ( a reduction in her GAG levels.) Of course there will always be a gamut of issues awaiting us but we have most definitely learned to accept today and deal with tomorrow tomorrow.
Peace!
Love,
Patty
Phew, I did it!!
Monday, April 5, 2004 8:11 PM CDT
Hello to all Julia's Friends!
Here it is already April and my mind and heart are stuck in the madness of March! Whoever coined that term was certainly affiliated with someone in athletics! In as much as it sounds like I am complaining I have actually embraced the magnifico performances of both of Connecticut"s Women and Men's Baketball Teams. As we sit on the cusp of history let us be glad in how well both teams have done thus far. How about them Huskies? Yeah!! Even Jules got into the spirit, crying out when her beloved Minnesota Gophers lost. Even now we have a soft spot for Minnesota Athletics and sheepishly admit if they won it would have been okay with us.
If basketball didn't keep us busy enough the Keeney Street Variety Show did. The life of a showbiz mom is tough! Jamie joined a crew of boys to sing the "UCONN Huskies" theme song, while Elizabeth, along with a group of friends, performed a copycat of "Groovy Baby," as well as, "Summer Nights" from the hit movie Grease. It was a delightful evening and I would be remis if I did not mention what an incredible performance it was by all those who participated. Kristen claimed her few minutes of stardom a couple weeks earlier performing with her Irish Step class at the Manchester Senior Center. It is good to have all these activities under our belt but it seems no sooner does one end and the next begins. Here comes spring basketball, rookie league, soccer...ohhh!
Not to be outdone, Julia has continued to keep us on our toes as well. Whatever ailments she had in February continued in one form or the other into March...just to make sure March really was "madness." Honestly, there weren't any major problems, just enough to keep us guessing, worrying, researching and second guessing ourselves.Her latest issue is a mysterious skin problem. A few hivelik bumps have appeared and are spreading very slowly but surely. And perhaps it is just that, hives, but who the heck knows? So far no one has booted her out of school or the hospital so I'm assuming its okay to continue our lives in a normal fashion and not quarantine ourselves.
In a rare order of events we managed to secure a sleep study in a rather expedient timeframe. While scheduling was far into June a cancellation got us an "in" down at Yale. The Tuesday after Easter Jules and I will spend the night down in New Haven. Hopefully, Jules will choose to sleep but I can't help chuckling at the prospect that she won't sleep long enough for them to figure anything out, other than that she is not a good sleeper. Hmm, tell us something we don't know already. The study will (as I have mentioned many times before) give the doctors a clearer picture of Julia's breathing patterns and how well she is able to get oxygen to the various organs. I've been rehearsing the sensible words of Julia's pulmonary doctor, "Nothing bad can come out of the sleep study." Now thats a much better painted picture than what some have said! I cannot say enough for a positive attitude!!
Enough of the medical for now. We've got great, big, happy news! We're going to Disney! Zippity-do-dah!! On Julia's behalf we have accepted the trip through the Make-a-Wish Foundation. On Julia's fifth birthday she'll be dancing with Mickey!! And you just know how we all love to dance! Watch out Goofy! After the long winter and slow to emerge spring we are delighted to (and most grateful) to be heading south. We'll be bursting with things to tell you when we get back! A little prayer for a healthy trip would be most welcome!
Have a Blessed Easter!
Love and peace,
Patty
Sunday, February 29, 2004 7:45 PM CST
Hello!
No news has meant "no time" this month. With about fifteen appointments (including Julia's weekly ERT) over January and February the medical saga just doesn't let up. That teamed up with the bitter cold, a nearly three week stint of Julia being sick and two visits to the ER made me certain that anything I might write wouldn't be very promising thus you won't get many details from me.
But we know Spring is coming and we're all too glad to leave behind the winter and move forward.
"Forward" seems to be the general motion as we have been in the midst of several transition meetings for Kristen, Elizabeth and Julia (perhaps) who will all be entering new schools this coming fall. Though high school and middle school are hard to contemplate we are blown away by the fact that Julia will enter kindergarten this fall. Can someone please explain how that all managed to happen?
Medically speaking, I think Julia's issues remain status quo. She received good reports from dental, cardiology, orthopaedics and pulmonary with the same disconcerting news
from ENT. (Being that she probably needs her adnoids and perhaps tonsils removed with history dictating this would be risky surgery for Jules.) This is certainly not a place we're eager to visit and thus we've made no move in this direction. We have agreed to a "sleep study" which will test for the apnea we believe she has and a myriad of reasons of why she might have it and how other organs are being affected. This will help us discern how we want to handle Julia's breathing issues.
ERT has been completely integrated into our regular routine. Each Tuesday we head off to the hospital ready but not necessarily eager for her infusion. "Tuesdays with Julia" may be a new book someday. We know we're lucky to have such a wonderful team of nurses and doctor to care for Julia and help us anticipate needs or address the needs that arise. Indeed, they are often the touchstone for optimism, hope and perspective. Thank you!
Please hold all those that are in the midst of medical crisis and uncertainty in prayer. With heavy hearts we extend our deepest sympathy to the Costanho/Lampson Families over the loss of their beautiful Jill. Please lift them in prayer. For all people...please pray.
Love,
Patty
Sunday, January 11, 2004 8:28 PM CST
Dear Friends of Jules,
Settle in and pour yourself a cup of coffee, this is a long one.
Perhaps I have been practcing letting myself "off the hook" a little too much. It has been a long time since I have given a proper update and I have been feeling the pangs of procrastination.
Procrastination, for so many reasons: the hustle and bustle of the holidays, avoidance of the never ending array of Julia issues, the sense that we could not possibly add anything new to what's already been written and the clarity of being in the future with our life as individuals and as a family. The outward signs of winter sure do draw one inward.
I know and have said before that once time transpires so does the emotion and trying to pen what happened a month or two ago is never quite written as well as when one is actually in the midst. So forgive the lack of details (I'm sure you are grateful) and I will try to resume Julia's page...with a sprinkling (okay, it's a shower) of family life.
While for most December is a time to hunker down and get serious about the holidays we find ourselves in the continual mode of birthday celebrating (above and beyond Jesus.) November 30 is Grandma G's b-day followed by Grandma M. on December 4, Jay on the 12th,
Grandpa Moran on the 26th and Grandpa G. on Jan 10th. The running joke in our family is that Jay will have a horrible birthday...there's been the flu, the hospital and/or over tired cranky kids (or wife) that all somehow seem manifest each year on the on the 12th. With his 40th birthday on the horizon I knew that all needed to change. I'm pleased to say the 12th was a day of happy celebration. We are both officially in our forties...though he looks much older than me. Definitely, in the future!!!
December danced along right into a splendid Christmas, followed by a low key New Years spent with dear friends.
Kristen and Elizabeth brought in the New Year while in Newport RI while babysitting for good friends of ours. Their excitement at the prospect of spending a day in Newport shopping, iceskating and eating was a sight to behold. They're growing up. Ooooh, there's that future thing again.
Our dear Jamie was once again a blast to be with during the holidays. His belief in Santa and excitement over all the razzle dazzle is magical. There were hints though that it might all be different next year. A questioning look about Santa's handwriting ("Mommy, that looks like your handwriting"...ooops) and a quiz on which gifts we gave him and which were from Santa reminded me that eight is after all the age "reasoning" kicks in. But it feels much too soon. We are not sure who we want it for more, Jamie or ourselves.
And of course Jules...there's always so much to share. The meaning of Christmas is so fully recognizable with Julia. Jesus embraced all the joys and the sorrow and with Jules we try we do the same. I recognize my own desire for all of this to be different. For Jules to see all the razzle dazzle just like Jamie. For her to crawl on Santa's lap and either bawl because she doesn't want to be near him or to giggle with thoughts of what Santa might bring her. I want the perfect gift to be a brand new doll for her to play with and a stroller to push. It is not to be.
Our Jules snuggles close to us, giggling the whole day. Somehow I know she knows, this is a special day. Her red velvet dress appliqued with three roses across the front suits this beautiful little girl perfectly. Her special doll wears the same dress complimented with a hat. Her siblings dote on her this day, helping her to open presents, telling her what gifts she's received, letting her touch them. The happy voices of all our children and the warm feeling of family togetherness is the best gift. Gratitude settles in our hearts. Thank you God.
Medically, we continue the hospital tour. Tuesday's with Julia have taken on a certain rhythm. If you remember Tuesdays' are Julia's ERT days. Thanks to Julia's four nurses Maureen, Renee, Leigh and Bertha, as well as Dr. Greenstein our days there are not drudgery as one might imagine. The actual setup and access has become more of a routine and the whole process from beginning to end is about five hours. Julia doesn't seem herself to me on these days as she is under the influence of hydroxine ( a pre med with affects like Benedryl....sleepy!) Our time there is spent in a variety ways. Some of the time Julia sleeps and I catch a quick read of the newspaper. Other times I play rec director and try to get Julia involved in a bit of playing. Still yet, there is plenty of talk about all her health issues and how we will broach each and finally the conversation of life between these wonderful nurses and myself (kids, sports, husbands, church etc.) adds a few more pieces to our quilt of friendships. And a beautiful patchwork it is!!!
I'm not so sure I have an objective stance on the ERT. I am told the effects have presented itself in a variety of ways. Seeing and being with Julia all the time I may miss some of the changes. On some days she seems so energetic and happy without the constant drip of her nose. On other days I don't see the positive affects of ERT as well and that always leaves a few questions in ones mind.
We continue to battle a few issues. Right now she's in the midst of a nasty ear infection, compounded by a runny nose and the start of a new cough. We are back to revisiting all the specialists this month and hearing their "take."
It isn't always easy to hear what they have to say....there are a few we just avoid as best we can. So far we received great grades in both cardiology and dental. Over the next couple of weeks we go to ortho and I'm sure she will need her braces refitted. ENT is slated the week after that and I'm hoping she hasn't lost one of her ear tubes, that her nose isn't running and talk of surgery isn't brought up again.
As you sift through all my bellyaching please be conscious and prayerful of the many you don't read about on web pages, there are so many. So many, young, old and in between that do not have the great gift of health bestowed on you or I. Let us all find peace in our imperfect lives.
Happy New Year!
Love,
Patty
PS- I didn't get to write about THIS weekend...Jamie made his first reconciliation, Awesome job Jamie! Jay went to Nashville for a conference. Lisa Post and I snuck in an hour visit with San Diego friend Amy White (mother of famous Susannah.) Very cool!!
Thursday, December 25, 2003 0:20 AM CST
Good morning Julia fans,
On behalf of the Moran clan, I would like to wish everyone a very Merry Christmas. It's 1:20am and this elf is tired, so I'll make this update brief.
Today we celebtate Jesus' birthday, however the sunshine Julia brings to us makes everyday seem like Christmas morning. Every new day with our Jules is a present! Yes, we do get saddened that our four year-old doesn't understand Santa Claus and get excited about Christmas, but she truely understands love. I know she feels loved and everyone who meets her gets attached to her beauty and love. Julia knows the true meaning of Christmas and that is her present to all of us on this wonderful day.
Good night, I mean good morning! Merry Christmas.
With continued "hope for Julia" and peace on earth,
Jay (for Patty and the rest of the Marvelous Morans)
P.S. Start the coffee, the clan will be awake soon!
Wednesday, November 12, 2003 8:58 PM CST
Hey there, friends!
Time has proven to be our scarcest commodity these days and I have totally let myself off the hook when it comes to being timely with these updates. To any of you that have clicked in more than once, I apologize.
Well, we've managed October! Yipee! With birthdays flanked on either side of Halloween it seems that the planning and partying has not stopped. Kristen is an official teenager! WOW! What a really exciting time in her life! Jamie turned a whopping eight years old this past weekend and has grand plans for his birthday party this coming weekend. We can't wait! Miss Elizabeth will have to wait until February for her turn but we're in no rush.
Princess Julia has kept us busy, very very busy. Last weeks treatment began well but eventually her wire kinked up and was no longer delivering the enzyme into the vein but into the surrounding tissue of her arm (infiltration.) This made for a very swollen looking arm and the need to reaccess her in a different part of her body. Now had this been a smoothe process we would have been none worse for the wear but...after several tries and three different people attempting to access her we were all totally drained. The nurses were devastated that she couldn't continue her therapy for the day. I was emotionally exhausted watching my little girl be jabbed with a needle and Jules, though always a trooper, had had enough. Though her permanent port was planned for just a week and a half away phone calls fly between doctors and the operating room to get Jules in A.S.A.P for her port.
Her surgery was last Thursday and I'm pleased to report that it went well, her PICU bed was cancelled and a mere overnight was all it entailed. Access now will be far easier and proved to be far less stressful this week for all involved! YIPEE!! It is always a huge relief to have surgery be successful and behind us. Now we can just focus on the ERT and what it is doing for her. Jay and I believe she has more energy and is attempting to move more than previous to the ERT. Her liver and spleen have both shrunken down. Her skin is becoming softer. Her tongue is smaller and she seems more verbal. Not a bad start. We believe in miracles.
Julia continues to be delighted with school. I regret not being the one to see it all but have learned that it takes a village to raise Julia. Though as her parents we are central to her life, others have most generously shared their time and gifts with Julia. Her nurse Mary gives me wonderful updates about the happenings in school, as well as provide her with the warmth, love and support that she needs while in school. We couldn't be more grateful. Our favorite stories about school are not all of Julia's achievements (though we do love those too,) our favorite stories are about much the other children just love Julia. Reports hint that all the children want to be the one to sit next to Julia or to hold her hand! Nothing could make us happier for our sweet Jules!
Life continues! Chaotic, rushed, full, playful, loving, laughable life. Life is good!
Please say a prayer for all our little Hurler friends. Prayers for all those who are ill and the families that care for them. Prayers, all the way around!
Love,
Patty
Saturday, November 1, 2003 9:14 AM CST
Hey there!
The Hartford Courant has "one upped" me this week. Take a look at Julia's article in the Life section on Saturday, November 1st. I'll give my own update this weekend!
Patty
Thursday, October 16, 2003 8:17 PM CDT
Dear Friends,
I am pleased to report that we have completed two weeks of Enzyme Replacement Therapy! It is good, really, really good to have that "first" behind us.
For Julia's first treatment I am anticipating and have been told to expect to be at the clinic for a full day. It is not only Julia's first time, it is also the nurses first time doing this particular infusion and so as it is with anything new things are a bit slower in the beginning. Our seven a.m. arrival is completely doable because we are ultra organized, hoping organization will ensure a smoothe morning. It does.
The nurses have been concerned about accessing Julia for the infusion. Though they manage both weeks it takes several pricks and pokes in one arm before they fear blowing the vein and choose to move onto the other arm. Jules is not at all bothered by the needle because I have covered her in Emla (good ole numbing cream.) I on the otherhand actually feel queasy. This is the beginning of a new medical saga and what makes this so uniquely different from all the other times is that we have chosen to do it. Enough said for now.
By 8:30a.m. the enzyme is dripping into her system. By 12:30 her dose is completed. By 2 o'clock I'm on my way home. Yes, on my way home!! Considering I had not planned to get home until 5 or 6 o'clock I am on cloud nine. There is a "high" in knowing she didn't get a reaction, that the first (or is that "worst") is over and that after school I'll be home to greet the other children, find out about their day and offer up a snack. Simple things, simple pleasures.
It is too early to see results, though we all have interpreted some sign or another that ERT is working...talk about the "Placebo Effect!" The next plan of action would be to have a port put in which would allow for much easier access. The con of the port is that every time Jules gets a fever we would end up being admitted to the hospital to run antibiotics in case of a line infection.
Our little Jules has gone Hollywood! Well, not quite but we're excited just the same. We've been asked to participate in a documentary about children with Hurlers who receive ERT. Our first filming was when we met Dr. Pastore from N.Y.U. and another home based taping is planned for tomorrow. The film will benefit doctors, residents and other medical personnel in understanding, as well as identifying the disease. It will also be utilized as a resource for families of newly diagnosed cases. As Jay and I search for ways to be advocates and a resource on multiple levels for other families we have decided that if this helps someone then its the right thing to do. Education of doctors is another priority and this film will have direct implications. There are so many avenues to pursue and not nearly the time or energy to pursue them all. Someday, but not now.
Lots more to write about but I don't want you to strain your eyes or bore your brain! See you in a week or two!
Love,
Patty and the rest of the gang
PS I am continually astounded by those of you who tell me you keep up with Julia's website! Know that means a lot to us. Thank you!
Monday, October 6, 2003 8:32 PM CDT
Dear Friends,
Tomorrow is Julia's "Big Day." We will arrive at CCMC by 7:00 am to begin ERT. We're feeling both optimistic and hopeful that we have made the best decision possible. There is no looking back. From here, we will walk in faith that our God has led us to this place. There's just no other way to do this.
xox
Patty
Wednesday, September 17, 2003 8:59 PM CDT
Dear Friends,
I have always felt that our "new year" begins with each new school year. New expectations from new teachers, new schedules and new demands. It is an exciting time and yet with every happiness I sense there is some sadness. Another summer past, another year of childhood gone but for pictures and sweet memories. Our first days of school here brought that mixed bag of emotions. Jamie and Elizabeth bounded out of the house with enthusiasm and total energy for the new school year while Jay and I looked on with a knowingness of time gone by. This year the big deal for Julia was riding the van to school. Okay, it was a really big deal for all of us. It took all of us to see her off and watch the van drive away. Nary a tear from Miss Julia, though the same cannot be said of the rest of us. There is far more happiness in that scenario than sadness and so we've adjusted just fine. Kristen, believe it or not, has entered the eighth grade. Though school is a priority for her we've been hearing an awful lot about makeup, hair, nails and yes the "B" word. How can that be?
If school didn't add enough excitement to our life this September, Elizabeth did. As if it wasn't quite enough to be taking Julia to the hospital continually Elizabeth landed herself in the ER twice with excruciating pains in her side. After several tests, pokes and prods she is admitted and we are told an appendectomy will be performed in the a.m. Well, funky as our medical history tends to be she didn't get an appendectomy at all and the pain is attributed to a viral infection. Julia was tickled pink to be the visitor at CCMC and not the patient. Now that's a first!!
But it didn't last for long. For the last several weeks our conversations with Dr. Greenstein have intensified in regard to Enzyme Replacement Therapy (ERT.) Last week we met with three nurses who would work with Julia while receiving ERT, as well as Dr. G. We are greeted with "This is a historical moment." Shoot, I'm not sure I'm up for that. I want it all to be simple, no big deal, easy and straightforward. Is that too much to ask from God?
Julia's nurses were sent to Utah for ERT training with "THE" doctors who are experts in both Hurlers and ERT, including Julia's doctor Charlie Peters from Minnesota. I mean, imagine that? Julia's nurses here in CT did some training with Julia's doctor from Minnesota!? They also had the opportunity to hear from Dr. Kakkis and Dr. Muenzer on ERT, both of whom I've spoken with at one point or another. Those connections always amaze me and Julia is often at the heart of them.
We attended another giant meeting on Tuesday. Dr. Pastore from N.Y.U. came to CCMC to offer a presentation on ERT and then afterwards spend some time one to one with us. Dr. Pastore ran the clinical trials on ERT at N.Y.U. and so his vantage point was of particular interest to us. We are still processing all the information but are totally grateful for Dr. Pastore's honesty, as well as clarity about ERT. Oddly enough, we did not walk away ready to jump into ERT but rather have asked for more time to do more talking and processing. The same questions come to mind over and over again.
The reality of these conversations is very difficult. Jay and I both find ourselves overwhelmed with the amount of info to be processed, particularly the weighing and measuring the equation of, "Is this right for Julia?" And beyond that, there are so many other questions that have no real answers...
ERT was scheduled to begin next week but we have asked to delay it. All involved in the process of implementing ERT championed the decision.
May we all continue to walk in the light of God and know His love for us!
Peace,
Patty
Tuesday, September 16, 2003 8:13 PM CDT
Dear Friends,
I've reached my self imposed deadline for an update. Frankly, the monthly updates leave me with far too much to write and in this month of September that is a total understatement. Rather than blur the contents of Miss Julia's little life I'm going to opt to write a real update tomorrow night. Today has been an exhausting day spent with medical personnel in which we were reminded once too often that our little girl has a disease that just isn't going to go away.
Tomorrow is a new day! There are many blessings in a day being only 24 hours long!!!
xo
Patty
Friday, August 15, 2003 8:19 PM CDT
Dear Friends,
As the sun loses itself earlier each night into the skyline we are reminded of the beginning of school being just beyond the horizon. But not before we squeeze out every last drop of fun to be had during summer vacation.
While July brough it's share of adjustments there was also plenty of room for some good old fashioned fun. My sister, her husband and five of their seven children made it home for a little family time. There was a gamut of activities planned and unplanned but I imagine the neighbors wouldn't want us to forgo mentioning ten or so kids and four crazy adults dancing their hearts out to "Cotton Eyed Joe" in front of the house (no drinking involved.) I suppose there's nothing worse than three middle aged woman and one who could qualify as elderly thinking they're hot stuff on the dance floor. But hey, we're family and all those strange idiosynchronsies just kind of melt away and even become fun or at the very least funny. I would love to hear about your "moments" via the guestpage. Please share!
Once August hits there is a strange sense of urgency to fit everything in that hasn't been done thus far during the summer. For us that meant a few nights away down at the seashore and then up in the Berkshires. It is always good to go away and create some wonderful summer memories. This year it was as simple as the look on Jamie's face at spotting a couple of snakes or Elizabeth's amazing Pocahontas ability of swimming underwater and catching giant tadpoles with her bare hands or Kristen's delight at hearing her voice echo throughout the valley. They continue to discover their world and unearth all that they love. I for one will never forgo these precious moments to a longer schoolyear.
Jules graciously goes along with everything we do. It is rare for her to complain about being in her carseat too long or demand that we eat this second because hungwer will claim her life. Her requests are far more subtle but given total attention. Her summer vacation has been riddled with therapy appointments which she seems to really enjoy. Her accomplishments vary from week to week and there isn't always consistency but we are grateful for that which she can do. This summer we've been paying particular attention to her speech. We've begun giving her regualar mouth massage and stimulation to wake those sleepy muscles up and in turn helping her with her speech. It is amazing the words we believe she's trying to imitate when we pay full attention. A log of these words will help us reinforce and build upon the sounds she can make. Her speech is one of the areas I have identified setback over the past year and paying closer attention may be helpful.
We are still waiting on the ERT. We have all our systems in place but continue to wait on the hospital to get things in order on their end. ERT has had some tremendous results in other Hurler children that have begun to recieve it around the country. We anticipate the ERT to address many of the Hurler issues including her heart, lungs, liver, spleen, skin, hair, hearing and joints. When you look at Julia you do not see all the systemic issues she's battling and it is easy to believe she's "healthy." To a certain extent she is healthier than she's ever been but we cannot ignore nor pretend that she doesn't have these other issues. ERT does not pass the "blood brain barrier" and therefor Julia's mental capabilities will continue to decrease. ERT cannot help Julia's bones and so all bone issues that Hurler children normally have to contend with will still be a problem (hips, knees, back...) We are hesitant to say how Julia might benefit in concrete, seeable, measureable ways because the truth is no one knows but we do know the benefits outweigh the risks which have been documented to be very minor. Once again we are being asked to trust in our ability as parents to make decisions regarding Julia that only a parent can make. There is no other human that can love her the way we do.
At a followup visit for ENT we go over a plan for Julia's ear, nose and throat issues. Of all the tests identified for me last month the sleep study becomes the most important. The doctor believes Julia's adnoids should come out and if a sleep study shows apnea then he would plan to take her tonsils as well. Julia has compounded issues a bit by coming up with this new gurgly throat sound which at first hearing sounds like choking. We are left wondering if this is the disease progressing or just some funky little sound Julia has decided to come up with to make life interesting. The doctor reiterates a common trend with diseases like Jules and their breathing patterns/issues. I reiterate the findings of ERT and the belief that peripheral tissues can benefit. Once again everything is on hold until we see how she responds to ERT.
Life goes on. Day by day. Thank you God!!!
Blessings!
Love,
Patty
Monday, August 11, 2003 9:58 PM CDT
Hi!!!!
My best intentions have not been enough...It is late and other duties have been calling my time and attention. By the weeks end I will post an update!
Hoping you are all having a wonderful summer! Is there a way to bottle this time of year??
xox
Patty
Tuesday, July 8, 2003 9:54 PM CDT
Dear Friends,
I know I have been remis writing when I can't remember how to sign into Julia's website to create a new journal entry! Life's tempo has been incredibly busy. We are patiently waiting for the lazy days of summer to arrive but there appears to be no immediate relief.
Julia's schoolyear culminated in a brief program for parents with the children singing and sharing nursery rhymes learned. It is always a Kodak moment when your preschooler takes part in a presentation and today was no exception. How can I explain the pride in watching our sweet four year old little girl sitting side by side with other four year olds? How incredibly meaningful to have several parents approach me with the stories their children bring home about Julia. Our hope for Julia has always been that she will be loved for the person she is. I knew in this moment that our hope had been fulfilled by these wonderful children!
A followup appointment with Julia's ENT doctor for her continually runny nose got us four more appointments. Come on...a CAT scan, a complete bloodwork, allergy testing and a sleep study? We miraculously managed a CAT scan without sedation but have decided the other three tests will just have to wait. Talk of removing her adnoids, as well as her tonsils and landing back in the ICU is not what we have in mind at this moment. Plus, there is a belief (by at least some doctors) that Enzyme Replacement Therapy(ERT) can help the peripheral tissues, thus reducing or even eliminating the need for such drastic measures. Now for that "pie in the sky" Enzyme Replacement Therapy...
We continue to move forward. A Fed X package of paperwork to sign off on arrived just yesterday from Genzyme. With our permission they will initiate talks with our insurance company. In about a week we are anticipating full approval and I would imagine ERT would begin shortly thereafter. We ask for support of our decision. The intersection of God and medicine is about as complicated as it gets, trust me. In pursuing ERT we are choosing a more comfortable, healthier, longer life for our Jules. In my next journal update I will give a detailed explanation of the merits of ERT. Julia will be one of the first (if not the first) Hurler patient in CT to recieve such treatment. Sometimes Julia's story feels more like a movie than real life.
Julia has a new "stroller." Actually it is a special needs "Convaid Cruiser," specifically measured and suited for Julia's needs. We have been hesitant of acquiring lots of special equipment because we don't believe its necessary, nor does it fit in with our philosophy of letting life be as normal as possible. There is no judgement here on what others choose to do but we know what is right for us. Having said all that I was uncertain about how I would feel about actually putting Julia in her new Cruiser. Well, today I did it. We ventured off to the pharmacy with her raspberry cruiser packed in the trunk. I managed to do so without a single tear drop (another miracle) and actually marveled at how well I can maneuver her set of wheels. We'll race any carraige anyday!!
July has sadly become the "farewell" month. Early in July my brother Rob, his wife Kelley and their two children took up residence in Holland. Though it is not their first stint overseas we all had the silent hope that they would stay closeby. Unfortunately, the tug at our heartstrings does not end there. After thirteen years of faithful and awesome leadership to Saint Bridget Parish our pastor, confidant and friend, Joe Donnelly, will leave to become pastor in another parish. There is no proper way to thank him for his guidance and support throughout some of the most difficult points of our life. And alas, our dear friends, as well as neighbors, The Raiciks, will head to Glastonbury to their beautiful new home. Our neighborhood just won't be the same without that crazy, funloving family! May all have the blessings of happiness, love and friendship! And remember, no matter where you go the Morans will find you!
Love and peace,
Patty
Sunday, June 8, 2003 7:45 PM CDT
Hey there!
Yes, there's actually a new entry but my writing skills are a bit rusty so bear with me.
In my last entry I was concerned about a forthcoming PPT, so let's start there. At a PPT decisions are made about how best to address the educational needs of a student with special needs. The needs vary greatly from individual to individual and so an IEP or Individualized Education Plan is the goal of the PPT. Together with therapists, teachers, parents and an administrator we review past performance and design a plan for future performance and how we will go about attaining those goals. The stress comes in when all are not in agreement about how best to implement the educational plan. At a conference back and March there were clear indicators that we were not all on the same page about what was best for Julia. While educators look at her in terms purely educational, our role as parents is to look at the big picture. That does not mean any of us were wrong, just that we needed to reach some common ground about those issues. I am pleased to say we did. After some good honest, open, communication we reached decisons that I think felt right for all. Julia will go to school next year three mornings a week and maintain some home services on her off days. If illness becomes an issue more home services will kick in and if the three day a week schedule works really well we may try to fit in a fourth day. This is a huge move for us but we know how genuinely happy Julia is at school. Of course, saying it and then actually doing it may be two different stories. Ah well, we have all summer to adjust to it and nothing is ever written in stone.
Our other huge news...Enzyme Replacement Therapy. Yes, I think I've already told you that it's been FDA approved but now we've had face to face discussions about what this might mean for Julia. We were both so pleased at the amount of time the doctor spent answering our questions and his unhurried manner and genuine concern for the decision we need to embrace. Our own thought processes has wrapped itself around this issue entirely and it was uplifting to know that none of it had escaped the doctors own thoughts. He's done this before, he knows. My initial excitement gave way to the sadness of why three years has passed before it was available. Even a bone marrow transplant is old news in the medical world and yet we're still in the game. We do not always know what to hope for, only to have hope. As this chapter unfolds we will pass along info.
Julia has been terrific. Our little puff-a-lump has gained over seven pounds since last December! Those scrawny legs have been replaced with healthy chub, her belly has begun to burst through her clothing and I'm being forced to purchase a very appropriate size five for her! This is great except for the difficulty I'm beginning to have in carrying her. Hmmm, that's definitely going to take a little creativity on our part to figure out the best way to do this. I know we will manage just fine.
We've also been working with her feeding herself. Okay, this might be pretty straightforward for an O.T. but I was so proud of my ingenuity of putting a tiny bit of peanutbutter on a spoon and sticking food to it so it wouldn't fall off. Julia picks the spoon up and manages to get it to her mouth all by herself! So cool!! She's also demonstrating interest (okay, its imposed upon her) in standing and she's been rolling over and trying to get on all fours. The fact that she's even motivated to do these things is a huge change from six months ago! And so, despite the awful description of this disease we have witnessed some teeny tiny improvements which mean such a great deal!
Believe it or not summer is just about here. (The time warp of winter is only an illusion.) Wishing you all a refreshing, safe and funfilled summer!
Love and peace,
Patty
Wednesday, May 14, 2003 7:38 PM CDT
Hi there!
I haven't forgotten all you faithfuls, really! Not writing usually means we're fully engaged in other activities and falling into our beds totally exhausted. This is good! But tonight I have my heart set on giving at least a brief update.
We continue to chase Our Jules running nose. The only letup seemed to be when she joined her other three siblings on antibiotics for strep throat (oh, that was a fun week!)Once she was off the antibiotics her gooey, yucky, bubble nose returned. Just today we changed her to a new allergy med. I'm keeping my fingers crossed. Six boxes of kleenex later, one red, raw nose and a mom who is tired of chasing boogies one would hope that something might be helpful. Perspective would be good to remember right now.
Our visit to orthopedics brought no real news. The curvature of Julia's spine seems to have regressed but only to the point of what she was initially measured for. I sensed the doctor being just a tiny bit impatient with my indifference to acquiring lots of special needs equipment. As far as I'm concerned we will do what we can for as long as we can as long as it is not harmful to Julia's wellbeing or our own.
Our cardiology appointment was upbeat. The doctor thought Julia seemed great and didn't feel that another echo was necessary at this time. Could it be that some of her issues might stable out for now? One can only hope.
Our connections with dental have been somewhat frequent. A set of xrays from radiology would hopefully give the information they could not attain last time. Julia has a cyst in her jaw that will need to be monitored. At this point in time we are not very worried, as many people have cysts for years without any repercussions. The uglier cysts can wreak havoc by growing very fast and causing damage to the jaw. I'm just not going to believe that Julia could have that type of cyst. But in time we will know for sure.
While school has continued to be a wonderful opportunity for Julia I have found myself fully understanding the stress of dealing with the system when you have a child with special needs. With our PPT forthcoming I am truly hopeful that all can be worked out in a way that is acceptable to all of us. Unfortunately, the almighty dollar plays a huge role in determining what Julia can recieve and how those who make such decisions will respond. We are determined to be Julia's advocate, as well as be honest about what we believe is suitable. I am positive that all will bring their best selves to the table and work on Julia's behalf. A prayer for a PPT filled with justice would be most appreciated on May 23rd.
Congratulations to Uncle Rob and Aunt Kelley and a great big welcome to our newest nephew, Liam James! Awesome job Albertus Magnus baseball team! Good luck in the NCAA tournament!
Prayers all the way around!
Love,
Patty
Sunday, April 27, 2003 8:56 PM CDT
Dear Fans of Julia,
We continue to count our blessings celebrating Julia's fourth birthday on Easter Sunday! A special dress and white patent leathers distinguish this VIP. Thirtyfive plus family members gather together to share in on the celebration of the Risen Christ and Miss Julia's birthday (as well as three cousins bdays.) An easter egg hunt, a bounty of food and gorgeous weather made for a perfect day. Happy birthday Jules and all you other cool April born peoples!!!
A regularly scheduled appointment with pulmonary found Jules suffering from allergies in the worst way. A continually runny nose, post nasal drip with choking qualities and a nose that just won't work led the doctor to put two new meds on board with the hopes we are treating allergies and nothing more. Jules seems a bit more at ease with her breathing but I must remember that just because she doesn't complain it doesn't mean she feels fine. I understand the pain tolerance of children like Jules to be quite high because they've experienced so much. If only most people complained so little!!
Tomorrow we head back to dental for a post op checkup. A call into Minnesota led us to a dentist who has quite a bit of experience dealing with Hurler children. We are hopeful that this dentist will be able to shed some light on the issues of Julia's teeth. It always is a good thing when people work together for the greater cause. Not knowing all the lingo myself it is sometimes far wiser to have doctors talk directly to doctors than risk passing on incorrect info. As time goes on I find myself more interested in pouring myself into just being Julia's mom than being a medical expert on Hurlers. It is a balance though and being knowledgeable about her issues has only worked in Julia's favor.
I have had another lenghty conversation with a doctor here in CT regarding Enzyme Therapy. Though the drug should be approved literally any day now there are many hurdles yet to jump. Insurance companies have yet to give approval for paying for the drug which could hinder patients from receiving it until June. Also, a team of nurses need to be trained specifically for its administration and the site of the administration has yet to be determined. Of course my plug is for CCMC. The thought of breaking in another whole hospital and staff is exhausting! The drug has to be monitored and since research of its affects will continue systems need to be put in place. Finally, we need to be sure we would be doing the right thing for Julia.
I almost forgot to mention that Julia is now in a big bed! Actually, she used to be in a bigger bed (ours) which invariably meant Jay or I ended up on the couch or floor or anywhere we might catch forty winks. The musical beds just wasn't working. One too many nights with too little sleep forced us into the inevitable. Yipee!!!! We're all sleeping better, we're all happier and no one is heard in the middle of the night saying, "Roll over, roll over!" Sleep, its such a beautiful thing!
We wish you the blessings of a beautiful spring (I think it might really be here.)
Peace,
Patty
Sunday, April 13, 2003 7:10 PM CDT
Dear Friends,
Shortly after my last update I received notification that surgery for Julia was back on for our original date and time. HUH? It is too complicated to explain but somewhere between the dentist knowing Julia shouldn't wait too long for surgery and my irritated response at having been bumped we got our date back with less than 48 hours to go. My regret was that so many of you weren't on board praying for it to be a success. Perhaps our own prayer resonated with God and it was enough. Her surgery was a sucess!
During presurgery we consult with anesthesiologist about the issues we are most concerned with, intubation and extubation. Now mind you Julia's surgery is minor and for just about anyone else there wouldn't be an overnight at all. But in light of her record a PICU bed has been reserved. Using fiber optics and information from her past records teamed with a pep talk and plea from me they managed just fine.
Our opthamologist checks the pressure of Julia's eyes to see if glaucoma might be an issue. Her pressure is fine and depending on how you look at the situation this can be deemed good news or bad. Good because it is normal but bad because there isn't anything to treat, meaning there becomes even less hope for her eyes.
The ENT doctor is forced to put new tubes in Julia's ears because he finds her eardrums to be bulging with fluid. He is concerned at how stretched her eardrums are and the need for tubes again. The stretch of the drum itself can affect hearing if it does not return to normal. Though my understanding of the ears is not complete I can sense from the doctor that we will be watching her ears more closely from here on out.
The dentist has his work cut out for him.. Julia gets her four front teeth pulled, four filled and four sealed. He finds her teeth to be relatively loose but the bone around them dense. One tooth was just beginning to abcess. The xrays prove what I already had feared, there are secondary teeth missing. There are lots of issues surrounding Julia's teeth which we will try to address in conjunction with the dentist over our next several appointments. Dr Matthieu will be a new regular in our life. I am grateful for his attention to detail and his choice to forge ahead despite any misgivings he had about taking responsibility for such an involved patient.
The PICU docs suggest that Julia looks great and probably would be fine to go home but just in case she will stay the night. Thus our visit to the PICU becomes more social than harrowing. It is always wonderful to catch up on the happenings in each others lives knowing a little piece of the PICU is etched upon our hearts. We are further aware of our connection when docs that have nothing to do with Julia for this stay stop in and chat. Julia can do that. She has a special way of bringing people together. Brilliant!
In closing, please, please hold Cathy and Jake close in prayer. Sweet Bella has earned her angel wings. My hope for them is peace, wholeness and awareness of a God that loves them. We also remain ever conscious of all the military and their families who are left behind. We pray for our friends in the thrust of serious illness. For all, we pray.
Love,
Patty
Sunday, April 6, 2003 7:31 PM CDT
Dear Friends,
Jules has managed to escape her cold only to be assaulted with diarrhea. She's exchanged a red nose for a red bottom but seems no worse for the wear. Indeed it would be wonderful to have her feeling 100% but we know things could be worse. We'll take a cold and diarrhea anyday!
I've been on the frontlines dealing with doctors all week long. I know I've been like a broken record talking about surgery for Julia's teeth and ears, sorry. This week everything was just about totally coordinated including an opthamology exam while she's under the anesthesia. My arguments for getting her into surgery sooner as opposed to later struck a chord with someone because we were offered a cancellation date this coming Thursday.
The dentist"s misgivings about putting her under for minor surgery translated into him sharing every horror story available in his memory concerning anesthesia. Thank you. Thank you very much, just what I needed to hear. Julia's file has made such an impression that even though the surgery scheduled is minor, the chief anesthesiologist actually suggested a PICU bed be available for her for overnight observation. Being safe, of course, is always first and foremost but psychologically it makes the whole ordeal that much more difficult.
I suppose all this is a moot point because on Friday the whole surgery was called off. Someone didn't communicate and I can assure you it was not me. We lost the surgery date. All the coordination is wearisome but somehow I'm sure it'll all work out.
The "winter that just won't end" can't defeat our Sprintime spirits (okay, I'm fibbing just a bit!) Kristen has danced her way into spring by joining an Irish Step Dancing class and is just totally delighted with her newfound skills. Elizabeth has eagerly joined the MBA and will be playing basketball twice a week. Jamie anxiously awaits Rookie League and having his dad be the assistant coach. The echoes of Spring are here! Yipee! Now if someone could just inform Mother Nature!!
On a very serious note I would implore you to remember Sweet Bella in your prayers. Bella has Hurlers and due to complications has suffered excessive bleeding in her brain. Her parents, Kathy and Jake have been told their little girl will never be the same as when she entered the hospital. Please hold them in prayer as well as our military and their families. Thank you!
Love,
Patty
Sunday, March 23, 2003 7:34 PM CST
Dear Friends,
The past few months have culminated into an act of war. I am nonplussed by the justification for using barbaric and inhumane methods to bring about liberation and peace to a country that posed no immediate threat to the wellbeing of the rest of the world. In a society that is so "civilized" I am ashamed that we believe resorting to such tactics is more beneficial than continued peace talks. Perhaps it is even more complicated than what I comprehend or... maybe not. It seems that people have spoken. Peace, not war. I wonder what it will take before we truly grasp that killing is never the answer. One cannot help but grieve in but complete darkness for the lives lost, for lives yet to be lost. Our world is a lesser place to live in right now. Continued prayers for those who serve our country, their families, all Americans and Iraquis, as well as all others who are scathed by the effects of this war.
Now that I've taken full advantage of my freedom of speech and this valuable resource I will turn my attention appropriately to the reason for this website, our sweet Julia.
Julia has a cold that just won't go away. After three weeks of holding her own with gentle sniffles it escalated into an upper respiratory infection that left us concerned enough to take her into the emergency room last Sunday. A very deep chest cough and a nose that oozes constantly turned out to be just that. A chest xray proved there was no pnuemonia. A peek in her ears showed no ear infection. She was sent home with antibiotics simply for the reason that "they know Julia's history" and thought it better to use the antibiotic prophylatically than risk something big and bad arising. With her cold going strong a week later we continue to be a concerned but remember everything is relevant.
Two straight months of going to school without missing a day has been compromised by her cold symptoms. I've cancelled out on school, as well as some of her therapy appointments. When she doesn't feel good it isn't going to help to try and push her to do things she doesn't feel well enough to do. Staying close to home and getting lots of TLC seems a much better way to approach this. Now if we could just get rid of that cold!
Coordination talks continue! A third attempt to get a proper hearing test failed. Our plan of getting Julia to sleep and obtain a brain stem study of her hearing just couldn't be pulled off. My frustration with the whole process led me from Audiology directly to the ENT's office.
Enough!! It's time to take a different approach. Without giving you the entire lowdown it is decided that we will schedule Julia for surgery through dental and have a ear exam while she's under. If indications suggest she needs tubes (fluid) they'll go ahead and put the tubes in. Scheduling issues will prevent any of this from happening immediately. We'll keep you posted. In the meantime a little prayer that Julia's teeth don't get infected beforehand would be most welcome.
My experience at the Legislative Hearing on behalf of the Board of Education Services for the Blind was more of an education for me than an opportunity to speak my peace. Upon arriving at the hearing there was about two hundred people, mostly seeing impaired or blind all with far more experience to speak their peace than me. I was fascinated by the process of giving testimony by those both for and against BESBE being absorbed into the Department of Social Services. We lasted but an hour at which point Julia's jibber jabbering was gaining more attention than what I was comfortable with (she was speaking her peace!). I had no idea that these hearings often last all day long and sometimes into the evening! All in all it was a wonderful learning experience that I would not hesitate to become more involved in when issues discussed strike a chord within.
Please continue that vision of peace! As always, thank you so very much for checking in on Jules. It means so much!
Patty
Sunday, March 9, 2003 7:42 PM CST
Dear Friends,
I figured I would take this opportunity to write while I am neither blinded by snow or frozen by sub zero temps. I understand that is all about to change (again) in the near future and rather than subject you to a cranky writeup I thought I'd spare us all.
Our Jules has been sporting a cold but otherwise seems happy and functioning. Our followup to the ENT didn't help us arrive at any clearcut decision about wether Julia needs tubes or not. While one tube was completely missing and the other floating in the canal the doctor wants her hearing retested before he suggests yet another surgery.
So....we have scheduled another hearing test.
The dentist is waiting on the ear/tube info before proceeding on her teeth. If we do surgery on the ears than it would make sense to have the teeth pulled while she's in the operating room. The situation becomes more complicated when we come to coordinating two procedures with two different clinics. Whoever schedules her for surgery has to use their operating room time to let the other clinic do their surgery. Time and space wars over the operating room! The dental clinic is scheduling surgery into June and the ENT clinic has been subject to having one of its docs called in for service. What about our Jules? I don't have too much patience for beuracracy and yet to work through this patience is exactly what I need. UGH!!
Though I have written very little in recent months about Enzyme Therapy it has not been forgotten. It is very close to being approved. Just last week I had the wonderful opportunity of speaking at length with Amy Holland, mother of three Hurler-Schei children and first family recipients of Enzyme therapy under the clinical trials. Who better to talk to than someone with that kind of experience? I've also had extensive conversations with Genzyme associates trying to pin them down to specifics to no avail. In regard to ET, it will not be a miracle drug and our decision to use it or not has yet to be determined. There are many questions that we must answer in our own hearts and minds before we move forward. This is the perfect time to be hammering out those issues...and there are many. Special thanks to our West Coast friend Amy White (yeah Amy, the cold weather rocks...NOT.) for being an incredible resource, friend and motivator.
Finally, I know we have all been affected either directly or indirectly by the budget crisis here in CT. One area where we may personally feel the affects is in services provided by BESB for Julia. If you are so inclined please consider contacting any of the following persons and let them know closing the Board of Education Services for the Blind is a mistake. Reduced and eliminated services for the most needy sends a dangerous message. Weather permitting I will trudge to The Legislative Office Building and speak my peace at the Public Hearing.
Senator Joseph Crisco................860-240-0189
Rep Julie Wasserman..................860-240-8700
Senator John Fonfara.................860-240-0484
Rep Robert Congdon...................860-240-8700
Senator Kevin Sullivan...............860-842-1420
or
Govenor John Rowland.................860-566-4840
Let them know you want them to keep BESB independent.
Finally, special blessings on our new niece/cousin Megan Bridget Moran. Welcome! Adios to my brother Rob who has ventured off to Holland for work. Prayers for Mary Ellen, as she transitions into a new job and life this coming week!
Peace,
Patty
Tuesday, February 25, 2003 8:58 PM CST
Dear Friends,
I think I heard a bird chirping yesterday morning. Surely warm weather will follow. Like Noah, we are awaiting some sign of life, beyond endless snow, rain, wet and cold. Connecticut has begun to feel like God's forsaken land. We are yearning for the warmth of sun, long walks of thankfulness and the noise of busy children playing outside. Soon, we promise ourselves, soon.
While we wait for utopia life goes on. Thank goodness!!
There is school to attend to, homework to finish, CCD classes, basketball games to see, dinners to make, grocery shopping to be done and birthday parties to plan. Not to mention appointments to be kept, therapy for Jules, bills to pay, paperwork to keep on top of and when time allows a few minutes to sit down and breathe. (Yes, breathing, nice, slow breathing...that would be important!)
Julia's last two appointments at the dentist tested my ability to breathe, period. They need to pull four teeth. We saw this coming yet until it is said by the dentist it isn't real. Perhaps this seems a minute issue in comparison to some we have experienced but each loss is still a loss, yanking at my heartstrings. I cry during the entire appointment. There may not be a second set of teeth. Some things really are not fair. Hurlers is one of those things.
Another appointment with the head honcho of dentistry at CCMC confirms it all, her four top, front teeth will be pulled. Our next step is to determine whether this will happen in the operating room or the clinic itself. If Julia does in fact need tubes put in then the teeth would be done simultaneously while under anesthesia. Otherwise, there is a distinct possibility that the procedure would be done right in the dental clinic without sedation but with novacaine. Neither paints a pretty picture in my own head. You already know how we feel about anesthesia and how many of you can imagine an almost four year old strapped down awake while they take teeth out? Okay, time for another deep breath!
We made the momentous step of having Julia measured for a special needs stroller today. As I have mentioned in the past we've avoided this but I have come to realize that we need to do something. Completely ignoring the inevitable just doesn't seem to be the best path. So in about three months (yes, it might take that long) Julia will be showing off her new set of hot wheels. We will also be in the market for a specialty carseat as well and will have the opportunity to check out the latest and greatest at the CT Rehab Expo in early March. We are in the future and need to learn to live it.
Praying for sun, lots and lots of warm sunshine!
Peace,
Patty
Friday, February 14, 2003 8:54 PM CST
Dear Friends of Julia,
HAPPY VALENTINE's DAY! For so many this is just like any other day but for us "hopeless romantics" it becomes necessary to mark the day in some special way. We did that. In our own little way, despite the morning rush, the juggling of schedules to make things work, the late afternoon fender bender and the dinner that was delayed by more than an hour we managed to make it special. The card that says "I love you," the mid afternoon phone call and the flickering candles with a not so romantic dinner...all say so well what we are committed to. Even if in the midst of life's craziness when none of it seems to work quite perfectly, it is all perfectly good. If I could give a better reason to celebrate Valentine's Day, today would be that reason. We are reminded of the many blessings that are ours.
February 14th has many associations for us, not the least of which is the anniversary of Julia needing CPR and setting us upon a course quite unlike that which most our age experience. The desire to make the day have a positive connotation led us to the decision of making and donating beautiful fleece blankets to sick children at CCMC today. Along with my fellow organizer and blanket cheerleader, (known by most as Lysol Lisa,) as well as the support and generosity of fellow parishioners, confirmation students, CCD students and a girl scout troop we were able to help make the hospital a cheerier place to be in today!
The highlight of my vist at CCMC was the opportunity to speak with the grandparents of a little girl just recently diagnosed with leukemia. I know I may not know exactly what they feel but in so many ways I believe I understand.
There is no connection quite like the one of "understanding" and I know the connection has been made. I realize Julia's life has given us many opportunities. I only hope and pray that we can do justice to the opportunities presented to us.
While Our Jules continues to do well, clinic visits with all her specialty doctors are neverending. Long ago we accepted her fate of being on the revolving hospital door but sometimes that acceptance simply turns to exasperation.
An early morn appointment 45 minutes away takes but a total of seven minutes. We are to make another appointment in the next two weeks so that the problem may be addressed. Yikes! I thought that's why we were there this morning!!
It is becoming more and more probable that Julia will need surgery to have new ear tubes placed in...but our next appointment will more neatly make the conclusion.
Jules has continued to bless us with her sweet gigggles and smiles, at all hours of the morning and night. Though she believes she is some princess that can sleep whenever she likes I have begun to inform her otherwise. Just the other day after a 4 am wake up call she decided to go back to sleep at 6:30. But it was a day in which I had much to get accomplished. My little sleepyhead ignored my pleas to awaken. Not one to like being ignored I continued with our morning routine, I undressed her. She slept. I bathed her. She slept. I donned her coat and hat...she slept. I tried, I really tried!
Julia's eating has been incredible but has brought to light another whole set of issues. She's getting heavier and harder to carry around. I have relented from our independent position of "being able" and have sought out a "handicapped parking" sticker. I guess there is a point at which you are independent and then a point at which you're being stupid. I have also requested a fitting for a "Cruiser," which is sort of a step in between a stroller and a wheelchair. The cold weather and struggle to go anywhere has done me in. Anything that will make mobility easier will be welcome. But even at that I still swallow hard understanding the scope of it all.
I suppose the scope of it all is quite clear when I hear the voice of an almost non verbal child say "I love you" on this Valentine's day. Have you told someone you love them today?
Love and peace,
Patty
Monday, February 3, 2003 7:08 PM CST
Dear Friends of Julia,
The days are busy and full! Fevers, vomiting, headaches and ear infections have all christened the new year. But this time it's not Julia. I suppose it might sound mean to say "yahoo" but in my heart of hearts that's precisely what I'm saying. The fact that Julia has not picked up on any of these viruses is awesome! But enough is enough and we are anxious to have four children simultaneously healthy.
In between these little episodes of sickness we have kept busy with basketball, in every way, shape and form. Last week we cheered Albertus Magnus Women, UConn Women, Jamie's rec league and Elizabeth's basketball team all to victory. We've cheered, played and refereed...maybe next year we ought to coach as well. Just two more months to go and that little orange ball will have far less control over our lives, but for now there are no "time outs." Even Jules has come to love the weekly basketball game excursions!
Julia has been doing really wonderful. We have had no qualms sending her to school these past several weeks and are always delighted by the terrific reports we've been getting from the therapists. At home she seems stronger each day. Last week I sat her down on her blanket, surrounded her with pillows, placed a few toys in front of her and went off to attend to a few chores. She actually played with her toys and managed to sit for several minutes before laying back down. My hope would be to get her to play independently while sitting for longer periods of time. She is showing so much more interest in her environment which in turn leads to learning. Yes, Julia is learning!!
We also had her braces rechecked this past week. If you remember I was fearful that the tightness in her achilles could be disease related. While this may or may not be true a simple widening of her braces made them much easier to get on. Our Jule's eating patterns are creating a little "puff-a-lump" and it is clear that just the few pounds gained may have interfered with me getting her braces on correctly.
Another hearing test proved to be fruitless. Essentially, she failed the tests but this time no one used the words "she can't hear." Instead it was suggested that her canals and tubes may be totally blocked, negating the effectiveness of an actual hearing test. However, we now know another appointment with the ENT is necessary. We also know that surgery for new tubes may be on the horizon. With Julia there will always be a horizon and while on most days it is a very beautiful there are times when all the procedures, tests and doctors in our life can feel a bit defeating, making the horizon less colorful than what we might hope for.
Prayers all the way around.
Love and peace,
Patty and the rest of the gang
Wednesday, January 22, 2003 at 11:52 AM (CST)
Dear Friends,
"Bring it on 2003" echoes of a challenge we did not intend. So please, (if you're listening God) do not feel the need to spice our life up with any new challenges. We are plenty grateful for what we have and would like for you to share the "blessings" with everyone else.
It has been an interesting month for Julia. Her health, vigor and comfort must in some way be attributed to her surgery in December. It is so good to know that her surgery actually facilitated her wellbeing. To see her eating with such total enjoyment is a pleasure. Her little legs are no longer pencil thin and her belly which once was concave is actually now resembling a buddah. The new Julia belly laugh is totally ifectious. Her stamina has increased which can probably be directly correlated with increased lung capacity. We are thrilled that everything worked out the way it has for Julia.
Our immediate concerns for Julia are related to her dental and ortho needs. Her teeth seem weakened and rotting, not unusual for children with Hurler's. Nonetheless, the trick becomes to stay one step ahead of anything that could happen. Infection is a big concern to me, as well as the possibility of losing teeth permanently. Her teeth have never been great but it is only now that we can put the issue in the forefront.
I am also concerned about the tightness of her achilles. Just six weeks ago we were able to get her braces to fit on correctly. Now, her left foot is so tight it is difficult to get her brace on at all. We are hopeful that with continued stretching we can reclaim some elasticity for her.
We are not ready for the disease to make this its claim.
Please pray for all the needs brought forth by illness.
Peace,
Patty
Saturday, January 04, 2003 at 08:38 PM (CST)
Happy New Year!
As we say goodbye to 2002 it is plain to see we have much to be thankful for. It was a year of transition and though we had our share of "growing pains" we've thrived. We never would have predicited 2002 and I suppose that is what keeps us adaptable and open to all that comes our way. Adjust. Don't predict. Roll with it. Life can be an exciting adventure if you learn to enjoy the ride. (Okay, okay, I'm still working on the "roll with it" but what one of us lacks another seems to make up for.) Team work, it's all its cracked up to be and more. I am most grateful to be a part of this team...Julia, Jamie, Elizabeth, Kristen and my darling husband (that would be Jay.)
In 2002, we successfully transitioned Julia from the Birth to Three program into the Manchester Public School system. By September we had reached another huge milestone of Julia actually going to school at Buckley. Our hearts were stretched in ways we never knew we were able to be stretched but we did it. We are as pleased, as we are proud of how well this transition took place.
Changes at the Moran household didn't stop with Julia. Not to be outdone by her little sister Kristen made a giant leap from Bennet Jr. Middle School to Two Rivers Middle Magnet School in East Hartford. As we all know, any change for a pre teen is momentous but Kristen carried off her new assignement with aplomb! Jamie entered into first grade and has handled full days with as much maturity as a second grader. Elizabeth moved to fourth grade and now has the honor of being with the big kids at Keeney. Just to make sure life didn't settle down too much Jay made a wonderful career move by joining Albertus Magnus College in New Haven. I guess if you need to make some changes there is something to be said for making them all at once!!
Onto 2003. It's here! A new year, a new adventure. Come on 2003, bring it on!!! We're ready!
Our Jules has been hanging in there! Her doctor was pleased with the way her scars have healed and Julia's overall appearance. We were given a list of what to watch for and were dismissed with an appointment in place at the end of January. Jay took Jules into the hospital yesterday to have her checked out for a nasty cold she was sporting. I couldn't help but chuckle at the fact that she had a chest xray done, not so much for the doctor being on the lookout for pneumonia as for curiosity and anticipation of seeing what her insides look like "post" hernia repair. There's just something about Jules that manages to draw people in...I am aware of each docs unique sense of ownership with our Jules and quite frankly, we're grateful.
With anticipation of a much quieter and hopefully boring 2003 I will make no promises as to when I'll write again. Remember no news is always good news!
Wishing you all a healthy, happy new year! Cheers for all of you!
Love and peace,
The Moran family
Thursday, December 26, 2002 at 07:51 PM (CST)
Dear Friends,
I've got writer's block. The beautiful descriptions one might write about the impending birth of Christ seems like a moot point a day late (at least for this amateur.) The open mouthed look upon incredulous childrens' faces Christmas morn is old news. The presents have all been unwrapped. The toys have all been played with. There are no more surprises. It's the day after Christmas.
But I'm not disappointed. Quite the contrary. Lest you think I'm some sort of Scrooge let it be known that I love Christmas and all that compliments it! But admittedly, the 26th does bring a sigh of relief. To me it signals time to move forward with all we have gathered in, all we have absorbed, all we have learned. My hope for you is that this Christmas season continues in your heart well past the twelfth day.
For us Christmas is a joyful time and yet we clearly can relate to the bittersweet feeling of this holiday. It is hard not to look back to a year ago, or even two and see how Julia has changed. We do not dwell upon it but there are windows into our sadness and everyonce in a while we must acknowledge it, embrace it and than let it go. That is how we manage it. This is the best we can do.
Our Jules has been home since Saturday the 14th. Overall, she has done very well but we continue to worry about various symptoms. She seems exceptionally sleepy at times and yet the fact that she just had major surgery would make this all very probable. She also continues to have bouts of diarrhea which we are beginning to suspect is related directly to what she drinks. While that may seem easy enough to remedy the issue becomes more complicated knowing she gets a big percentage of her nutrition and her calories through her liquids. Tomorrow we will have her post op checkup and I'm ready to insist upon a referral for GI. And so begins a new round of appointments...
Our family wishes you and yours a continuation of Christmas!
Much love!
The Moran Family
Friday, December 13, 2002 at 09:06 PM (CST)
Hello Friends,
Hmmm...my original intention was to update you on all that transpired since my last update, in abbreviated form, of course. The problem is I've forgotten it all. One moment, one very intense moment and all that happened before that moment is basically obliterated.
I remember that she was about to be discharged in less than two hours. I had packed up our belongings and straightened up the room a bit. Audiology had obliged my request to see Julia "inpatient" since she was due for her checkup. Off we went. Julia was being cranky and I began to feel like the appointment would need to be cancelled afterall. As I was attempting to cancel her appointment with the receptionist I see that Julia is very, very pale and her lips are blue! I know we need to get back to her room up on the 8th floor. Once back the look on her nurse's face makes me know she is just as concerned.
It is but a few moments of people working on her, getting her hooked up for vitals, getting blood samples, giving her oxygen and getting a chest xray. Her oxygen levels should be in the 90% to 100% range and yet the monitor shows the dismal number of 50. The PICU emergency staff arrive and begin to bag her...a "code blue" is called. The room is inudated with people in just a few moments. Though Julia's oxygen levels are far lower than they should be Julia is very conscious, fighting the mask, the needles, the people. This to me is a really good sign. I try to assess the situation. Anesthesiology is called, as well as surgery. I can't contain myself any longer and let it be known that I need to know what is happening and what the plan is before anything happens at all. And another thing..."Why are there forty people in this room?" I know, I know, they want everyone and their brother available for whatever may need to happen, standbys, all in the name of being safe, for our Julia. I guess its okay then.
A few more moments pass, Julia is suctioned out. Her oxygen levels begin to increase. The room full of people quietly begins to disperse. The anesthesiologist isn't needed, nor surgery and the room they made up for her in the PICU won't be used. But she's not going home, not yet, not now. A couple of the docs continually check on her throughout the rest of the day. There are two or three theories of what may have happened and both point toward upper airway obstruction but there is no one direct answer for her episode. Observation for a few more days seems prudent.
Our consult with pulmonary directs us to the same two theories that have already been given credit. Dr. Lapin expands upon the theories and reassures me that he does not believe that she is at major risk of having this happen again but of course, it could happen again. Our paranoia about Julia and all her health issues has kicked right in.
Today you would never have guessed Julia's experience yesterday. She's busy jibber jabbering, giggling and having me dote all over her. Her coloring is wonderful. Her vitals perfect. And one cannot help but wonder why we are still in the hospital. Such is life with our Jules!
We are anticipating a Saturday afternoon discharge, a peaceful weekend and some time to just hang out together. It's been a long week and a little "home" will be rejuvenating to us all!
Great big "thank you's" to Kristen, Elizabeth and Jamie for being the best big sisters and brother a girl could ever want! "Gracias" to my wonderful neighbors and friends for helping out with the big kids, to Lisa for sticking with us in good times and bad, (the food wasn't bad either,) for cards, notes, phone calls, prayers and visits, and especially to our families for their unending support in too many ways to list. And finally, to all our CCMC friends who time after time demonstrate skill, compassion and friendship to Julia, Jay and myself, as well as Kristen, Elizabeth and Jamie, please know we are most grateful.
Peace and love,
Patty
Sunday, December 08, 2002 at 11:32 AM (CST)
Good morning to you!
The short of it is Julia will be just fine! For those of you whose interest is piqued and would like just a few more details please read on!
During pre-op we meet with the surgeon and he reiterates that there is less than a 50/50 chance of doing Julia's surgery laproscopically because the hernia is so large. We had already braced ourselves for this and had anticipated a good old fashioned incision. To our pleasure Dr. Weiss along with another surgeon's assistance is still willing to try to do it laproscopically. Smaller incisions will make the entire surgery less risky to infection as well as help immensely with the amount of time recuperation takes.
After being in surgery about 45 minutes we are told they're proceeding laproscopically but it is slow going. We are thrilled and become less focused on the amount of time the actual surgery will take. After about four hours of surgery Julia is taken to the PICU and we meet with Dr. Weiss. Julia didn't only have one Morgagni Hernia but two, one on the left side and a smaller one on the right. They were able to fix both! Woo-hoo!
Unfortunately it was necessary to keep her on the vent due to some swelling in her breathing airways. We found out later that it took five times to actually intubate her previous to anesthesia. While this was under a very controlled circumstances it will be useful information for the future. Remember, breathing airways of Hurler children are not straightforward and this can pose huge complications if not done skillfully.
Julia's disposition initally in the PICU was rather miserable. It was easy to see she was very uncomfortable. Beside the incisions from surgery, being on the vent there is a tube going into her nose down to her stomach. Because her intestines were moved around so much she is experiencing ileus(sp?) sleepiness of the intestines (her stomach does not work yet) so the tube decompensates everything hanging around in the stomach. Over a two hour period we were introducing pain meds to help settle her out. True to her history Julia is hard to sedate.
Being back in the PICU it feels as this is almost a continuation of last time. I draw on my inner resources reminding myself that this is entirely different from the last time. We are looking at a mostly healthy little girl fully able to recuperate from this surgery. Even so, staff is entirely sensitive to our being in the PICU at all. We are most grateful for all the familiar faces and the tone of concern offered our way. If your child is going to need continual care you want to know the people caring for her and indeed we do.
At midnight last night she was transferred to a regular inpatient floor. Jules was next in line to fly the coop and Jay preferred the transfer while awake as opposed to three o'clock in the morning. She's awake more often and cranky but getting a little morphine to ease the discomfort.
She will come off oxygen completely today and there's hope that her sleepy bowels are waking up. One day at a time...it'll all come together.
To all of you who called, offered help, sent a message, stopped by or offered a prayer we are most grateful. Your kindness has made us better people. Thank you!
Back to hospital duty!
Love,
Patty
Thursday, December 05, 2002 at 08:46 PM (CST)
Hello Friends!
The cadence of our lives has more purposeful this past week.
Unecessary obligations are put on hold. More time is spent doing what we should be doing in the first place; spending time with one another, enjoying the qualities of each that make our family uniquely "our family," we engage in some good conversation and take time to just "be." Julia always has a way of bringing us back.
The tree has been chopped down and put up, decorations are unpacked and slowly but surely we are finding their home for the month of December. While it is seems a bit on the early side for us it was imperative if we were to partake in the yearly tradition together. Tomorrow Julia will have surgery.
The purpose of her appointments on Wednesday are simply to see that she is in good health for the surgery. From a pulmonary standpoint she is doing just fine and has managed to stay free of colds and sniffles for about a month now. We've been on "high alert" for lurking germs and sickness ready and waiting to find someone vulnerable. The fact that she's been able to avoid it all speaks for itself. Her "primary" orders the gamut of blood tests which would alert the docs to a variety of problems if need be. I realize how out of practice we are when Julia's screaming at their unsuccessful first attempt to draw blood makes me nauseous. Some things I will never miss.
Today we opted to keep Julia home from school. Inclement weather would have been a good excuse but truly it was more selfishness than anything else. I didn't want to share her today. It was an awesome day for Jules and I can't wait to share all the neat things she did with her school friends!
At 9 am tomorrow morning Julia heads off to surgery. We are very hopeful that everything will go well. I will try to update over the weekend to let you know how things are progressing. In the meantime, all your prayers are most welcome. Please know we are most grateful for your continued thoughtfulness of Julia and our family during the rough spots!
Please continue to keep Ryan Kristoff close in prayer.
Love and peace,
Patty
Tuesday, November 26, 2002 at 09:25 PM (CST)
Dear Friends,
I am so pleased to report that Julia has begun to do some good eating again. I resorted to buying baby food but didn't much care as long as I could pump some nutrition into her. A steady diet of bananas seems to have taken care of the diarrhea but hasn't slowed down the number of times she needs to be changed. Ah well, you can't have everything. She still looks mighty skinny and I know the GI subject will come up next week during her pre-op visit but at least now I'm able to say she's eating a variety of foods and will feel comfortable avoiding too much discussion around a GI tube. Let's hope the docs agree.
Julia's therapists are really happy with the progress she is making. Julia is consistent in shaking her head "yes" or "no" and continues to surprise us with some phrases she repeats. On her "best" days she is just full of surprises and delights us all with the potential demonstrated. It is clear that her health (how she feels) directly affects how much she is willing to perform. How many of us want to perform when we don't feel good? Unfortunately, it is far too often that Julia is feeling a bit "under the weather." Discussion at her most PPT centered on whether it might be good for Julia to go to school for longer days or more often. Well...I was not part of that discussion other than to immediately squash the idea.
Surgery is scheduled for later next week. Sniffles, congestion or any sign of diarrhea will be enough to nix the plans. We are not looking forward to her surgery and yet having to put it off may be more frustrating, as well as risky. We are told to anticipate about a week stay at the hospital and a few weeks beyond that for recuperation. Our initial anxiety has given way to trust. There are so many reasons to believe that this will go well. We will try to keep you updated more consistently during surgery and recuperation but since it is the holidays we'll make no promises.
Our plans for joining in the Traditional Manchester Road Race are fast becoming dashed. The promise of several inches of snow, wind and weather dipping down into the teens is reason enough to make me choose to stay home with Julia. You'll find most of us (yet to be determined, some will run)snuggled up in front of the fire sipping hot cider, indulging in homemade cinnamon buns and catching the biggest and best parades in the morning. As the day continues to unfold we will enjoy the blessings of family, an abundance of food and the richness of tradition.
Happy Thanksgiving from our home to yours!
xoxox
The Moran Family
Thursday, November 14, 2002 at 09:07 PM (CST)
Dear Julia Fans,
Hmmm, the days and weeks seemed to have blended together and I'm not quite sure what I've shared and what I haven't. "KISS" seems appropriate (Keep it simple, Sally.) Let's see if I can rise to the challenge.
A little "good old fashioned" chicken soup seems to have helped Julia's diarrhea to subside. Her little ribs and backbones are peaking through her skin and while I think we have kept her well nourished our concerns about weight loss do continue. Attempts to get an appointment with GI doctors have failed and if we are honest it is our own hesitancy to hear more about a GI tube or "button" that has prevented us from pushing too hard. Certainly, we will need to have this issue addressed before surgery. Putting anyone "under" for surgery is risky business. Anesthesia is a funky drug and risks associated with putting Julia under (or any Hurler child) are not lost on doctors. If she has to be "under" the object of the game is to do anything that needs to be done all at once.
Julia's opthamologist appointment brought us just a tiny glimmer of hope. Sometimes as children change and grow the child responds to light or may actually have some vision. I explain that Julia's eyes roll back less now and occasionally I am left with a question in my mind of hmm...did she see that? Her exam does not show any such reaction to light but the hope that maybe, just maybe all vision is not lost all the time is a good feeling. We are not naiive but know that definitives in medicine are meant to be defied.
An opportunity to have Julia annointed at a mass for the Sacrament of the Sick soothes my own soul. With Julia it is sometimes hard to know where we would should stand. While we like to think of our lives as "normal" and Julia as thriving (which she is) we also need to acknowledge and process her life limitations. Pending surgery, as well as continual medical attention these past few weeks has made us do that. Receiving the Sacrament let's us let go and reminds us that God will see us through and through.
In a special way, full of love and affection we remember "Uncle Bud" and the Coffey Family. The loss of such a good man is a loss for all. We pray for worldwide peace and we pray for all young men and women who seek to protect our country when and if called upon.
So much for "KISS," maybe in person...
Oh yes, check out the new pictures of Jules and company! Thanks Wayno...your the man!
Peace,
Patty
Thursday, November 07, 2002 at 08:04 PM (CST)
Dear Friends,
Your in for it today!
Though I sit here with tight shoulders and furrowed brow I am realizing that all and all it hasn't been such a bad week. Time for an attitude adjustment! Too much medical information tends to confuse the mind and burden the heart. Heed!! One day at a time!! Tomorrow's worries empties one of today's strength (or something like that.) We know this to be true...
Monday Jules and I headed off to CCMC for her periodic checkup. Upon our 8:30am arrival we check in and are sent down to radiology. Her normal xrays of her spine are taken.
I am anxious because five months ago Dr. Smith indicated that a back brace would be probable. You never quite get used to the bad news and inevitably most of our news is usually bad. He slides her last set of xrays and new ones under the lamp. Good news! Though her spine resembles two continual "s"s running down her back the curvatures have progressed little or have even slightly improved by a degree. Yipee!! I am always most grateful when the doctors engage in conversation beyond the pure medical and Dr. Smith doesn't disappoint. Flanked by two residents I hope that they realize the importance of understanding the bigger picture of family and the needs as a whole unit. Discussions center around Jules but touch upon many areas and give me the opportunity to ask questions about a variety of issues. Sometimes the microscope on any one particular area is a bit of overkill.
My concerns about the skinniness of Miss Julia's legs and the looseness of her leg braces point towards a different problem. Her legs have grown, the braces are way too small! New ones will give her the support she needs. Her efforts of standing have seem somewhat thwarted and I had essentially determined that maybe our goal of having her walk and stand are outrageous. Smith encourages us to continue to work on that goal. Positive thinking...we like that! I have Jules refitted for braces. The process includes her getting a mold of her legs made with casting material. In a few weeks new braces will be ready and hopefully we will see a difference in the amount of standing she can do.
Monday night we receive the infamous phone call from Dr. Jennings, our second opinion on Julia's hernia. The first sentence out of his mouth let me know we are going where we don't want to go. Her hernia is "huge." Laproscopic surgery is not going to be possible and "good old fashioned surgery" is necessary. We have many thoughts on this, as well as misgivings and fears. In honesty, we are processing all the info still and while surgery seems inevitable we need more time to feel at peace with a decision like this. More info as things evolve... Again, we find ourselves thankful for a perfect stranger who would be willing to share his medical expertise in such a timely fashion, as well as demonstrate sincere concern over the outcome of a child he's only met through a picture.
Today's cardiology appointment brought a mixed bag of info. Yes, her EKG and echo both looked good, perhaps even better than last time. (Okay, two appointments saying things might be better than last time....what is going on here?) The doctor echos my concerns about Julia's slow loss of weight, diarrhea which has become a regular occurance and poor eating habits (the chew and spit method of eating is not helping her maintain weight and God knows one cannot live on Cheerios alone!) I am not surprised just deeply saddened that discussion of a "g-tube" is ensued. We don't want to "go there" either but I can tell it would be remiss not to make an appointment with G.I. and Nutrition.
Finally, I have discussions with Pulmonary about probable surgery, their role and what we need to do beforehand. An overnight pulse oxcimetry test will let them better understand her oxygenization levels to major organs baseline and implications of what we might expect for surgery. One of Pulmonary's big jobs will be to see to it that Jule's lungs are in primo shape before surgery. We all know the implications of intubation and lungs that are brewing with something. That's definitely another place we don't want to visit. Prayers for healthy lungs would be a good thing.
So there you have it. It's been a busy week. It's been a long week. We know the blessings of loving a special child!
Our Hurler Family has requested prayers of healing for Christina (Hurler Schei) and Morgan, both who are in extremely difficult medical predicaments right now. Know your prayers can lift these little girls and their families into the light of hope. Thank you!
Happy Birthday to Jamie, Amy and about twenty other people eating dinner at Bugaboo creek!
Peace!
Patty
p.s. Check out the new photos!
Thursday, October 31, 2002 at 11:32 AM (CST)
Hello to Julia's goblin friends!
Time marches on! The falling leaves and crisp, autumn air are reminders of time passing. Kristen turned twelve last Friday night and Jamie will become seven years old next Thursday. The reality of "where does the time go" reminds us to enjoy the fun and affection in this moment now. There is no buying back time with your children, so spend it well.
Miss Julia seems settled into her school routine. Undoubtly, we have had to maneuver around this cold or that asthma attack but I believe now that the initial separation anxiety is gone we are both able to enjoy our time. Reports of Julia being excited upon entering the classroom, being very vocal and enjoying snack are all solid indicators that this was a good move. Another PPT reviewing "the plan" is in place for next week. While the winter months may make it more difficult for Julia to attend (sickness, colds etc.) I believe our plan will remain the same with an addendum of how to proceed if she needs to have more home therapy.
About a half a dozen doctors at CCMC have concurred that the time for surgery is here in regard to her hernia. However, due to her disease we were told by the surgeon it "wouldn't be unreasonable to still opt out." This conflicting recommendation (if you can call it such) has pushed us to seek an outside opinion. Through a newspaper article written about a fellow parishioner and her son we found a doctor in Boston that specializes in these type hernias. How timely an article!! Dr. Jennings contacted me on the same day I made the inquiry and we walked through the "should we," "shouldn't we" theories. I coordinated Julia's records and xrays and have had them sent to Boston for Dr. Jennings opinion. At this point in time, he totally agreed that if we were to pursue surgery that CCMC would definitely be the place to be because of the doctors longstanding relationship and intimate knowledge of Julia and her conditions. Though we have scheduled surgery we are waiting for Jennings imput. We would be delighted to cancel at anytime!
Jay and I have contacted the Ronald McDonald House in New Haven and are working on a couple of possibilities for helping them. We are hoping for townwide collection of the soda tabs which when converted to cash means thousands of dollars for the Ronald McDonald House. We are also in the midst of organizing our families to prepare and serve meals at the house on occasion. Having had the experience and now the opportunity to "do something" with it is a blessing.
We are excited about the unfolding of so many new opportunities. (Stay posted...I'm sure there is a way for you to help too!)
Happy Halloween!
Blessings,
Patty
Thursday, October 31, 2002 at 11:32 AM (CST)
Hello to Julia's goblin friends!
Time marches on! The falling leaves and crisp, autumn air are reminders of time passing. Kristen turned twelve last Friday night and Jamie will become seven years old next Thursday. The reality of "where does the time go" reminds us to enjoy the fun and affection in this moment now. There is no buying back time with your children, so spend it well.
Miss Julia seems settled into her school routine. Undoubtly, we have had to maneuver around this cold or that asthma attack but I believe now that the initial separation anxiety is gone we are both able to enjoy our time. Reports of Julia being excited upon entering the classroom, being very vocal and enjoying snack are all solid indicators that this was a good move. Another PPT reviewing "the plan" is in place for next week. While the winter months may make it more difficult for Julia to attend (sickness, colds etc.) I believe our plan will remain the same with an addendum of how to proceed if she needs to have more home therapy.
About a half a dozen doctors at CCMC have concurred that the time for surgery is here in regard to her hernia. However, due to her disease we were told by the surgeon it "wouldn't be unreasonable to still opt out." This conflicting recommendation (if you can call it such) has pushed us to seek an outside opinion. Through a newspaper article written about a fellow parishioner and her son we found a doctor in Boston that specializes in these type hernias. How timely an article!! Dr. Jennings contacted me on the same day I made The inquiry and we walked through the "should we," "shouldn't we" theories. I coordinated Julia's records and xrays and have had them sent to Boston for Dr. Jennings opinion. At this point in time, he totally agreed that if we were to pursue surgery that CCMC would definitely be the place to be because of the doctors longstanding relationship and intimate knowledge of Julia and her conditions. Though we have scheduled surgery we are waiting for Jennings imput. We would be delighted to cancel at anytime!
Jay and I have contacted the Ronald McDonald House in New Haven and are working on a couple of possibilities for helping them. We are hoping for townwide collection of the soda tabs which when converted to cash means thousands of dollars for the Ronald McDonald House. We are also in the midst of organizing our families to prepare and serve meals at the house on occasion. Having had the experience and now the opportunity to "do something" with it is a blessing.
We are excited about the unfolding of so many new opportunities. (Stay posted...I'm sure there is a way for you to help too!)
Happy Halloween!
Blessings,
Patty
Monday, October 21, 2002 at 08:43 PM (CDT)
Dear Friends,
It has been a week of fascinating connections! At clinic last Wednesday we got to meet Miss Emma!! Picture our sweet Jules with a little pair of glasses, add on lots of chit chatting, little legs roaring to go and the short post BMT hairdo and you've got Emma! It was good to get that hopeful feeling for future children of Hurlers. With further research there will one day be a cure. Julia, Emma, Susannah, Elliot and all the other BMT Hurler patients leave a legacy of research directly helping children with the disease in years to come. Such special children!!
Pam Kristoff and her son Ryan were also at clinic. Pam and I were hooked up about a year ago when I found out through a friend she was down in Duke with her son for a BMT. Our correspondance was from time to time via email. Believe it or not Emma's and Ryan's families became fast friends and voila the Julia connection! We shared a few tears, the realities of the debilitating diseases and the question mark that envelopes our lives. Unfortunately, at this time Ryan's question mark is a more daunting than Julia's. Please keep him in your prayers.
The connections continued when I met Nicky's mom for the first time. Though our visit was short the words exchanged will be savored by both for some time. Our paths have crossed simply because we have sick children. I cannot doubt that the meeting was meant to happen. The indelible mark of compassion has been made.
Finally, there is one more connection but I don't know who it is yet. Someone from our parish does business with Miss Molly's grandpa out in Chicago. Until two years ago most of us have never heard of Hurlers Syndrome. Today our girls are changing that!!! (If anyone knows who this person is please let me know!)
Yes, I think these simple connections are awesome and believe they have the handiwork of God written all over them. Now, if I could just figure out how to proceed!!
For now it's back in the trenches! Miss Jules appointment kept us at the hospital for half the day. Her blood pressure was wild, her xrays of her chest were dominated with the image of her stomach up on her chest(here goes the "should we" or "shouldn't we" operate all over again, ugh!) Her breathing issues are back and my friend's day wasn't complete without vomiting on everything I own. No wonder her weight keeps creeping downward. I am hopeful this is Jules gentle (or not so gentle) reminder to not expect quite so much of her. A couple days of being still and snuggling might be just what the doctor orders.
New pictures are coming soon thanks to Wayno! Stay tuned!!
Prayers all the way around!
Moogies,
Patty
Tuesday, October 15, 2002 at 07:41 PM (CDT)
Dear Friends,
We had the wonderful opportunity to participate in Emma's First Annual Race for MPS in Winchester, MA this past Sunday. MPS is short for muccoplysaccharidosis, or in other words the umbrella for several lysosomal diseases including Hurler Syndrome. Miss Emma is our CT Hurler friend and is now about eight months post transplant, totally engrafted and faring well. While Emma was unable to be present at the race we had the pleasure of meeting her wonderful mom and dad, all her siblings (Gracie, Hugh and Charlie) and most of her extended family. Wow! There were a lot of people to meet!
We also had the pleasure of meeting Amy and Klane's (Susannah from San Diego) good friend Wendy and her children. Their lollipops and some conversation made the race move right along. Who cared if we trailed the whole way? (Okay, we are Morans and our competetive edge took place during the last mile, plus it always looks good if you jog into the finish line.) Next year perhaps Amy and Klane will join us?
And then there's Elliot. We got to meet him (his cool mom and dad too)! In a way it was like meeting a star. I've read about all these children for so long and to finally meet him in person is really, really great! It is hard to fathom so many of us together so in tune with what it is like to have a child with Hurlers. We speak the same language, our hugs resonate with understanding. I was thrilled for my children to see and be with other children who know their experience and instantaneously accepted their sister with warmth and affection. It was a great day for us for reasons beyond the money raised for MPS. I think you understand that.
After being welcomed at a gathering after the race we shared more conversation, compared notes and made promises to keep in touch. It just so happens that Miss Julia is scheduled at clinic tomorrow at about the same time Miss Emma is scheduled. Yeah! We get to meet another super star!
Lisa, we all really missed you!! Could you please try to time those fevers a little better. Gee wizzakers!!!
Special prayers for Miss Nicole, TJ, their families and all those who are ill in any way. We are mindful of the people terrorized in the DC area and we pray for peace.
God Bless!
Patty
Tuesday, October 08, 2002 at 08:57 PM (CDT)
Dear Friends of Jules,
It's been another memorable week on the Moran homefront! Julia is going to school without me. No, I'm not so thrilled but I know in my heart of hearts that she is in wonderful hands. Several weeks ago I was asked if I knew of anyone who might be suitable for the position and I had suggested our friend, who is also a nurse Mary Auyeung. Meanwhile,I was getting mighty comfortable bringing Julia to school and being an integral part of her educational process. Leaving her was not easy,for all of the right reasons. Had it not been for another family emergency that monopolized most of my thoughts I'm not so sure I would have managed at all. It is not that I don't enjoy having two hours utterly to myself but rather that this is clearly the future that I worried so about in the past. In oh so many ways it is a time to rejoice but it is also a time of letting go and quite honestly I have not learned how to do that with any sense of grace. Ultimately, I know Julia is fine and that school is an opportunity for her.
Miss Julia continues to put on quite a show with belching. Last week in church she led a command performance of burping and managed the attention and giggles from two rows of people (there goes the "Nice Family" reputation.) Up until today I refrained from calling the docs. While there appears to be no emergency both the doctor and I agree to have her rechecked over the next week. Knowing the seriousness of illness that they deal with I almost feel foolish with such a request but experience tells me not to ignore anything. Okay, I am definitely medically jaded!
Hooray for Grandpa!! He's doing just fine and was released from the hospital!
We pray for peace!
Patty
Monday, September 30, 2002 at 07:52 AM (CDT)
Good Morning!
It is out of character for me to be writing at this time but I didn't get a chance to update last night and I figured you good ole faithfuls deserved an update...so here I am!
I stand corrected. Last time I suggested that any health issues would be of an emergency nature. How soon I forget all those little bumps and bruises along the way that culminate into one big worry! On Tuesday night I went to a meeting leaving behind a perfectly healthy Jules. By the time I arrived home less than two hours later she had a full blown cold and was sporting quite a case of asthma. Nebulizers seemed to relieve her symptoms but by Wednesday night she couldn't make it between treatments more than an hour and a half. The docs suggested if the pattern continue that we take her to the emergency room. Lucky for all of us we were able to keep that visit at bay.
By Saturday I really felt Julia had gotten through the worst of it. But a strange new symptom was appearing...loud belching!! Okay, you all may think this funny and truly it may be nothing more but with Julia we do tend to read into everything and we start thinking about what her burping could be the consequences of. And on Sunday one of her more chronic conditions appeared...vomiting. As luck would have it Elizabeth got to be the recipient of one of Julia's deliveries. Need I say more? Again, funny on your end but this kind of humor we could do without.
Needless to say Julia had to miss a day of school. I was disappointed in light of the fact that her school schedule was really agreeing with the both of us. Such is life.
I think I hear the good morning cries of my little love bug and must go! I'll try to get back later in the week.
Peace,
Patty
Sunday, September 22, 2002 at 07:57 PM (CDT)
Dear Friends,
Phew!! We did it. Every Moran here on Strawberry Lane has settled into their new schedules/roles. This past week Jay made the leap into his new job at Albertus Magnus. As with any change there will be adjustments to make, for Jay, as well as the family (we're finding a way to love those long hours with happy hearts!) The excitement of all that has happened these past few weeks has not worn out quite yet but we are hunkering down and ready for whatever follows.
Though I'm sure I sound like a broken record indulge me one more time (hopefully several) in saying that Julia seems to be doing wonderful. At her last appointment the doctor and I agreed that any medical attention from this point would probably be of an emergency nature; heart, pulmonary, nuerological or that lurking hernia. I suppose this info doesn't sound so wonderful but in light of the fact that at one point we lived in a tenuous state constantly this info feels somewhat good...I can't quite explain, but I'm sure several of you understand instinctively having been in medical limbo as such. Also, despite everyones' musings at how "big" Julia is getting her weight is actually down by a couple of pounds. The doctor becomes my partner in crime in choosing not to make a big deal of this yet. I understand. Once she or I bring this to the attention of other medical personnel Julia will be caught in a myriad of tests (possible surgery.) My goal has been to pump extra calories into Julia (yes, while cutting back my own, ugh!) with the intention of getting her to gain a bit. Believe it or not aside from the gamut of specialty visits Julia's next regular scheduled appointment is in four months. Now that is amazing!!! A prayer that we make it that long would be accepted by anyone reading this!!!!
And school...Yes, our Jules has been doing so well! During "circle time" Julia sits in her special chair right along side the other children. If the song of the moment is "Old MacDonald" Julia holds onto to play figurines of the particular animal they're singing about. With each song she usually has some manipulatives to help her identify the concept. Certainly it hasn't all clicked quite yet but we are hopeful. Last week she also painted for the very first time...her face let me know she thought I was crazy but the satisfaction of seeing her partake in one of life's basic joys was incredible.
The biggest blessing of school revealed itelf last Thursday.
Anyone who has children understands the desire to have your child be liked, if not loved by the people he/she sees regularly. With Julia the desire has been even moreso simply because she cannot do for herself and must totally rely on others. I have been curious, as well as anxious about the other childrens response to her. It was an unecessary worry. At the close of school, the children gather once again to sing their goodbye song. I have been careful not to impose Julia on any of the children letting them do what is comfortable. Dani led the brigade by announcing that he wanted to hold Julia's hand. My heart melted just a little and then two more children announced that they were going to hold her hand as well! A very small gesture made by some very small people with huge implications! Have you taken the time to hold someone's hand lately?
On Sunday October 13th we will walking for Emma (our Farmington Hurler friend) in MA and would love some more company!! All proceeds will benefit the MPS Society to help find a cure for Hurlers and related diseases. Please consider joining us as I'm sure we'll have a ball! Contact http//home.attbi.com/~emmasrun for info and me if you want to walk as a group.
Finally, I understand that Caring Bridge is going dot org instead of dot com. In order to access Julia's website you will have to enter www.caringbridge.org/page/hopeforjulia. As always we thank you for checking in on Julia. Your support and endurance for reading these entries has been truly inspiring. I promise to get some new pictures on board next week!
Prayers all the way around.
Moogies,
Patty
Thursday, September 12, 2002 at 08:39 PM (CDT)
Dear Friends,
"Your the sweetest girl in the world." These are the words that gently pass through her daddy's lips into Julia's little ears. Julia laughs and gently touches her dad's face. Her hero. His heroine. Today was no exception and his day was highlighted by his little girl's first day of school.
I do not know every thought that ran through his mind but I can guess. I can guess that he swallowed hard with a lump infused with sadness but wrapped tight in hope. It is a day that only a year ago he couldn't contemplate, he was only allowed a day at a time. And here she is, the sweetest girl in the world freshly bathed, decked out in her khaki jumper and white cotton jersey with white lace socks and a pair of "Mary Janes." A Ronald McDonald House pin brightens her dress and reminds him of all that has come to pass and how grateful he is to see his little girl on her first day of school. She is beautiful.
Her new school is at the opposite end of town and even though I'm going to be with Julia during the morning he wants to go because he "did it with all the other children." The camera is rolling. We enter the class. There are no sounds of excitement elicited from Julia. There are no tears. Julia does not know she is in school.
Her daddy needs to go to work.
It is a "peer model" program and only one other little girl and Julia require a "para." We join in with circle time singing right along. I am no stranger to schools, teaching or children and so it is natural for me to partcipate fully with Julia unabashed. The morning becomes a mix of playing a bit and then resting, whatever suits Julia while the others mil around and do their thing. School or home music and the bouncing ball are still her favorites. We spend time exploring the feel of playdoh and the textures of the many rolling pins. While none of the children ask "what's wrong with her?" I expect and fully understand their long glances. All the children are sweet to us, allowing us to play along side of them, talking to us and making us feel welcome. I cannot help but be thankful. It isn't until the end of class that I actually realize that these children are the same age as Julia...It is my turn to swallow hard.
It is good to have had the first day arrive. There always seems to be so much emotion tangled in with "firsts." Four down, one more to go.
Julia, we are all so proud of you!! YOU GO GIRL!!
Moogies,
Patty
Saturday, September 07, 2002 at 08:19 PM (CDT)
Dear Friends of Jules,
This past Thursday Jay and I met with Julia's therapists, teacher, head school nurse and special ed director to complete a PPT (Pupil Placement Team) and formulate a plan for her education. It was a meeting I had been dreading and I am most thankful that Jay was far less rattled than I, as well as able to participate in the meeting. Our concerns stemmed from the idea that we had to choose between school and home services. After a few conversations with professionals in the area of special education I found this to be absolutely false. For a variety of reasons it was suggested that Julia go to school for two days a week. Initially, we were against this plan. But as we worked it through with built in flexibility for the amount of time she actually spends in the classroom depending on how she is on any given day the plan grew more appealing. In addition, I was asked to be her "one to one" at least for the initial transition (as long as my fingerprints clear.) This seems beneficial to all involved! Our twice weekly school visits will be supplemented with home visits, insuring that a missed day doesn't mean lost service. Amazing what can happen with open and free dialogue!!! A solution for all! In less than two months we will have another PPT to re evaluate.
Julia won't be the only one headed off in a new direction. This past week Jay accepted a job with Albertus Magnus College in New Haven as their Director of Athletics. It is an exciting career move for Jay and timed perfectly for our own circumstances! While we have some very fond memories of Saint Joseph College it's time for this Blue Jay to fly on!We'll be switching sweatshirts officially on the sixteenth.
As we close in on the one year anniversary of September 11th we ask all to remain cognizant of the victims. Though so many of our own lives have "carried on" the emotional toll on many has been shattering. Please light a candle in prayer and reflection for the victims and their families on Wednesday night! Spread the word!
Peace,
Patty
Saturday, August 31, 2002 at 10:12 PM (CDT)
Dear Friends,
Okay, okay. I confess. I got caught. After all my lamentations about summer ending and expressed sadness about the return of school and missing the kids I did it. I succumed to the "back to school dance." I couldn't help myself. The peace and quiet of the day got the better of me, not to mention that I had "time." Yes, time to get laundry done, run a vacuum through the rooms, wash the breakfast dishes before noon and most importantly just play, hold and love our Jules. Ahhhh.... (No finger pointing, I saw a few of you doing the same dance.)
I can tell Julia enjoyed our "alone" time too. Her happiness at having so much attention was evident by her laughter. We sang, danced and bounced on her big red ball. For the first time in quite a while she said "momma" and this week she mastered saying "eat, eat, eat" when she's hungry and not just by repetition!! She also commanded "bon, bon, bon" when she wanted to bounce some more. We practiced sipping through a straw, eating out of a bowl and other table protocol that even Miss manners would be pleased with. That's our girl!
On Tuesday Julia had her hands fitted for braces. The intent of the braces is to help slow down the rate of curling. It is suggested that she wear them through the night but while they seem comfortable enough Julia is not so pleased about having to wear them. My own mushiness over Julia and all her issues makes keeping the braces on her when she's upset very difficult. We'll work on it.
Julia's breathing this week seemed indicative of asthma. Three or four times this week a breathing treatment was in order. My understanding is that this time of year can present problems in those with breathing issues. We're keeping a close eye on it but are anticpating no major issues.
Trying to get Julia a PPT, understanding CT laws regarding special education, as well as consulting various advocates and doctors has taken up a big chunk of time this week. Our conversations about our concerns and needs for Julia and as parents has been quite affirming. We continually find that there are new circumstances that throw us off balance needing both time and conversation before a decision can be reached. God didn't give me patience but honestly I'm trying to learn.
On the school front it has been an incredible week. Jamie and Elizabeth have eased right back in with nary a problem. Kristen's first week at the new Two Rivers Magnet School proved to be both exciting and eventful. We are very proud of our pioneer! It has been a week of many "firsts" and now we're ready and waiting to settle in!
God Bless!
Love,
Patty
Friday, August 23, 2002 at 08:10 PM (CDT)
Dear Friends,
It's been so long since I've written anything of substance I am not quite sure where to begin. Our summer has been everything one could hope for. The "grand finale" took place last weekend when nearly one hundred "Coffey" Family members, offspring and spouses gathered for a family reunion. What an amazing testimony to my grandparents and the seedlings of family and faith they planted so long ago!
Truly, an awesome day to behold!
With school officially beginning in just two days we are trying to temper our loosey goosey schedules and get down to business. But we are not doing so without a real sense of sadness. Summer is ending, changes are happening. Kristen is entering seventh grade and has proven herself to be quite the young lady. An opportunity to be a student at the new Two Rivers Magnet School was presented to Kristen and she accepted. While we are delighted at her mature decision we are also aware of the bumps and bruises of entering a new school can bring. We are praying for a smoothe transition, not only for Kristen for all youth who are entering a new school/situation. Elizabeth is headed for fourth grade at Keeney and now is in the "big kid" hallway. Though we know she's ready it is hard to believe she's grown up quite so fast. Jamie is ready and waiting to become an official "first grader," though he shows just a bit of concern about missing Julia and leaving mom home alone. As a mom first grade is always the biggest transition knowing your child now spends most of his/her waking hours being instructed, taught and molded by someone else. We are grateful to have such a wonderful first grade teacher. And then there's Julia...
For the past eight months we have had meetings, PPt's and
more meetings on transitioning Julia into the school system. As the time gets closer I find my own feelings more mixed about what is right and best for Julia. Initially, I had hoped to have Julia go to school one morning (or a portion thereof) a week and then fill in the gaps with home therapy but have since found out that we must choose one or the other. I sincerely believe that being with other children will be wonderful for Julia but I am also leery of everything Julia might catch and have no intention right now of sending her off to school everyday.
I am hopeful that the school system would try to be both flexible and understanding of this unique situation. As difficult as it has been to send each of my children off to kindergarten nothing matches the tumultuous feelings of sending Julia off to school. A PPT is forthcoming.
Healthwise Julia has been doing well. She gave us a little scare with her breathing the other night which seemed remedied easily enough with some nebs but paranoia got hold of me and I lay awake listening to her breathe. Yes, we are creatures born out of our experience. Otherwise, (and my fingers and toes are all crossed) she's done really well. We have headed off hospital visits for most of the summer though next week will be the tipoff for a new round of specialty checks, as well as her final round of immunizations.
Prayers all the way around! Looking forward to being in touch with so many of you that I've missed during the summer months. Special hugs to our Hurler friends!
Love and peace,
Patty
Saturday, August 17, 2002 at 07:56 PM (CDT)
A warm "hello" to all,
Our computer is having technical difficulties. Writing an entry is a long and trying process. It should be fixed by the week's end and I'll give a real update. Princess Julia continues to do well! Thanks for checking!
Love and hugs to all,
Patty
Sunday, August 04, 2002 at 06:14 PM (CDT)
Hello Friends!
Our entries have been few and far between meaning life has taken on a more "settled" tone, at least for these few weeks of August. Once mid August kicks in it'll be a different story as we begin to anticipate the school year for all of our children but in particular Julia. We have also received the latest info regarding enzyme therapy and its accessibility early in 2003. While one might think we are leaping for joy over this new prospect nothing is ever quite so simple or black and white.
Julia as been doing so well! No one sees her without commenting on how well she is looking and how wonderful her coloring is! It is good to not feel so rattled by day to day issues and yet we still remain guarded because of all that has happened. Even so we've been "chillin" as much as possible!
Okay, my keyboard is not working and writing manually is
making me crazy. More next week.
For all those in the midst of crisis we pray.
Peace,
Patty
Sunday, July 28, 2002 at 08:50 PM (CDT)
Dear Friends,
The massage of sand on my feet, the gentle tug of the wind in my hair complimented by the warmth of the sun, are restorative. Long walks along the beach contemplating everything and nothing at all soothes the soul and eases the mind. The greatness of the ocean and the sky which it always meets halfway puts the miniscule in perspective. Vacation. We needed this.
With their dad the kids enjoy daily games of whiffle ball, surrounded by the sand and sea. With me they enjoy long walks along the shore exploring tide pools and any creature we get our hands on. There is time to frolick in the water, soak in the sun and build sand castles. Skim boarding, surfing and fishing are all in the realm of our experience this week. Our Jules experiences the beach different from most. She laughs when we put her piggy toes in the sand and screams when they touch the water. We want her to smell the salt, feel the sand and know the breeze of the ocean. Her time on the beach is brief and almost always encapsulated inside our little beach tent. But we are here, we are together and Julia isn't sick. All is right with the world!
The cottage is just a mere hundred yards from the beach allowing us to be together even when we're apart. Lazy afternoons of reading at the cottage allow Julia to get in a nap and the others to continue the fun on the beach. We thoroughly enjoy meals that are unrushed by the call of soccer. There is no desire to shop or crowd our minds with
things and so most days we stay put, quenching our thirst for relaxation and purifying activity (an 8 mile family bike ride with Jules!) It's a perfect vacation.
A very warm thank you to Emma and her family for sharing their beautiful reprieve with us. Like so many, your genrosity and goodness has been a light in our life. Thank you.
Moogies,
Patty
Sunday, July 21, 2002 at 09:26 AM (CDT)
Dear Julia Fans,
WE'RE OFF TO CAPE COD!
See you Saturday!
Love,
Patty, Jay, Kristen, Elizabeth, Jamie and Jules
Thursday, July 11, 2002 at 12:58 PM (CDT)
Dear Friends,
Our Jules was not a happy camper last week during the hot, hot days. Wilted and cranky (like the rest of us)she didn't do much of anything except manage to catch a cold which in turn brought on her asthma. Mom and Dad smartened up after a day or so and kept her indoors where the air conditioning brought a little relief. The affects of her cold are still lingering but she's perked right up with the cooler temperatures.
A new set of hearing tests (post new tubes) demonstrated that Julia's hearing was borderline normal. Considering Julia can no longer see there is a great concern that she maintain her hearing. In Hurler children hearing is definitely affected and so in four months we will run through the tests again. Hearing aids are on the back burner for now but probable at some point in the future (though they don't know Julia the way we know Julia!)
We have an appointment for hand splints to be made next week. From what therapists can surmise Julia's fingers are curled about %10. The splints are being made for night time use in the hopes of slowing down the process. Julia has already lost some of her fine motor skill. I see it when she holds a cracker. It slips out of her grasp and into her lap. It is disconcerting to know that at one time her fine motor was above and beyond most her age. I have noticed some other affects as well but must temper this with the fact that as her mom I can be overly conscious of every movement. Julia is happy, she knows she's loved and she's well taken care of...not half bad in the world we live in today.
Our Hurler friend Emma has returned to CT from Duke. The new marrow has engrafted and Emma is now receiving the enzyme Julia is missing. We are delighted for Emma and yet can feel the tug in our hearts for our Jules. Once life settles a bit we will get together and though we've never met (except through cyberspace) friendship is inevitiable. Please continue to keep children with this disease in your prayers!
Peace,
Patty
Sunday, June 30, 2002 at 09:16 PM (CDT)
Dear Friends of Jules,
Every once in a while, quite like a bolt of lightening I am aware of something magnificent happening in our childrens' lives as they interact with and get to know their little sister, Julia. Kristen plays her role as the eldest with a certain confidence, while Elizabeth nestles in nicely between her siblings knowing when to take charge and when to assume a different role. Jamie has had the unique position of feeling like the little one (and being put in his place)when his sisters are about and conversely being the big kid on the block when the girls were at school. Each child has his or her special relationship with Julia but it is Jamie I will write about tonight.
There are times when I wonder in what ways our children will be affected by all of our experiences with Julia. I have often said that I would hope our experience will make our children more compassionate to those with disabilities or perhaps lead them to a profession in the medical field.
But it is now that matters to us and the following is what I have witnessed in the love of a brother for his sister.
It is Jamie who manages to play a game of "Chutes and Ladders" with his sister. I lay her down next to him and the gameboard and ever so patiently Jamie rolls the dice for and counts the number of spaces to be moved for both of them, announcing each time who is winning and who is losing.
It is Jamie who answers for Julia the questions I ask and tells me "Mommy, that's Julia talking."
It is Jamie who sits next to Julia in the car and gently holds her hand to let her know he is there.
Each morning it is Jamie that snuggles into bed next to Julia awaiting his sleepyhead sister to wake up.
It is Jamie who has become an assistant to each therapist, helping make Julia smile, talk or settle down.
No night passes without an kiss goodnight and an "I love you."
It is Jamie who sings to Julia "You are My Sunshine."
Every prayer is for Julia. Sweetness is for Julia. Gentleness is for Julia.
It was Jamie that had a total meltdown when he found out he had a new little sister, not a brother. Funny how everything changes when we really get to know someone. May we all have the gentleness of heart and mind for those who need it most.
God Bless!
Patty
Sunday, June 30, 2002 at 09:16 PM (CDT)
Dear Friends of Jules,
Every once in a while, quite like a bolt of lightening I am aware of something magnificent happening in our childrens' lives as they interact with and get to know their little sister, Julia. Kristen plays her role as the eldest with a certain confidence, while Elizabeth nestles in nicely between her siblings knowing when to take charge and when to assume a different role. Jamie has had the unique position of feeling like the little one (and being put in his place)when his sisters are about and conversely being the big kid on the block when the girls were at school. Each child has his or her special relationship with Julia but it is Jamie I will write about tonight.
There are times when I wonder in what ways our children will be affected by all of our experiences with Julia. I have often said that I would hope our experience will make our children more compassionate to those with disabilities or perhaps lead them to a profession in the medical field.
But it is now that matters to us and the following is what I have witnessed in the love of a brother for his sister.
It is Jamie who manages to play a game of "Chutes and Ladders" with his sister. I lay her down next to him and the gameboard and ever so patiently Jamie rolls the dice for and counts the number of spaces to be moved for both of them, announcing each time who is winning and who is losing.
It is Jamie who answers for Julia the questions I ask and tells me "Mommy, that's Julia talking."
It is Jamie who sits next to Julia in the car and gently holds her hand to let her know he is there.
Each morning it is Jamie that snuggles into bed next to Julia awaiting his sleepyhead sister to wake up.
It is Jamie who has become an assistant to each therapist, helping make Julia smile, talk or settle down.
No night passes without an kiss goodnight and an "I love you."
It is Jamie who sings to Julia "You are My Sunshine."
Every prayer is for Julia. Sweetness is for Julia. Gentleness is for Julia.
It was Jamie that had a total meltdown when he found out he had a new little sister, not a brother. Funny how everything changes when we really get to know someone. May we all have the gentleness of heart and mind for those who need it most.
God Bless!
Patty
Friday, June 21, 2002 at 08:59 PM (CDT)
Good Morning!
Schools out!! While summertime brings on it's own set of images the days leading up to the last day of school were packed with emotion. Kristen, Elizabeth, Jamie and Julia have each continually managed to meet challenges presented to them, striving for excellence. It will be a hard year to top and so saying "goodbye" to teachers and looking toward a new year in which we know nothing about brings feelings of uncertainty. But for now we have traded backpacks for swimsuits and plan our time around summer recreation. Four days in and we're all exhausted!!
Julia has been doing fine. No more vomitting...Thank you God! Her own little schedule has kept us running. Everytime I think we will get a little reprieve from doctors I find myself back on the revolving door to CCMC. Nothing major, just endless tests and depending on the mood of the moment, mine,hers or theirs everyday is painted a little different.
On Tuesday we met with the newest surgeon at CCMC. As parents we were feeling more pressure to have her hernia repaired. Despite the fact the surgeon and BMT doctor from Minnesota suggest it be put on a back burner the doctors here were beginning to point to the hernia as an issue that needed to be addressed. We went to our appointment believing that this might be the time we would give consent. To my surprise, after hearing Julia's history, Dr. H. said he would be "hard pressed" to do surgey siting the first rule is "do no harm." After further discussion with our first surgeon they concurred that we should not do surgery. While we are pleased that she will not undergo this procedure there is little satisfaction in understanding their reasoning. We totally agree and yet...we would give anything to be in a situation that warranted the procedure.
On Wednesday Our Jules got another round of immunizations and had blood work done. Three nurses, three shots at once. Ouch! It hurts, it really hurts. Our visit is sobering and I must remember not absorb others thoughts and concerns. I remember my first day at CCMC almost two years ago (could it be?) seeing so many challenged children and believing their life to be full of sadness. How wrong I was!! How ignorant I was!! There are moments that are difficult but there are far many more times of joy!
We are planning a vacation now that there is no surgery "on deck."!! With the okay of the doctor and summary of Julia's history in hand we will actually go somewhere! The prospect of vacation has created so much excitement. The kids choice is the Cape but Jay and I are thinking somewhere that has a good sized hospital. Anywhere U.S.A. sounds wonderful!
Miss Molly Birmingham's article is out in the Woman's Day magazine. Remember to look for it in the grocery store. I can't wait to get my hands on it!
As always, prayers all the way around!
Love,
Patty
Wednesday, June 12, 2002 at 09:10 AM (CDT)
Hi Julia fans,
I'm back. It has been awhile since my last update. Ok, it's probably been a year. Computer problems have forced me to be the writer this time. I went into our computer last week and successfully killed (I hope) the virus that has been haunting us for weeks. That's the good news, however along the way I eliminated the use of the modem. Tonight I will try to get our computer at home up and running so Patty can get back to all her "webby" friends.
It is hard to believe that another academic year is coming to a close. Kristen will be moving on to 7th grade. The first year of middle school was tough on all of us, yet we survived and she had a great year in her academics, cross country, track, and new Bennett social life. Elizabeth excelled in third grade doing outstanding in the classroom and on the hoop court and ballfields. Next year brings big changes for Jamie and his best buddie Julia. After an awesome year in kindergarten Jamie is ready for the big jump to a full day in 1st grade. His teacher really enjoyed him and his new friends in his classroom. As a matter of fact, Jamie and his school buddies are playing tee ball together and are having a blast. As Patty informed you in her last update, plans are being put into place to have Julia attend school next fall for few hours a day week. This will be a big adjustment for Patty. Not only will it be hard to let Julia go for a few hours, she will actually have sometime to herself.
As I sat and listened to all of Julia's mom, therapists, and teachers at her last PPT, I couldn't believe we we were discussing school for Julia in the fall. It's amazing. Julia continues to embrace us with her strength, courage and love. She also managed to give Mom and Dad a night out on the town this past Saturday night. Dinner, a show at the Bushnell, and no emergency calls to come home from the "sitter". AMEN.
Beware neighbors, school is out soon. The pool is open, the Red Sox's lead is disappearing again, and the neighborhood is about to get louder. Welcome summer!
I look foward to writng to you all next year.
With hope for Julia,
Jay
Monday, June 03, 2002 at 09:09 PM (CDT)
Hey there, people!
Hmmm, where to begin, where to begin? We are enjoying ourselves at a lovely wedding. The best man is toasting the bride and groom. Our phone begins to ring obnoxiously and as I fumble for the phone I beeline for the closest door. My heart is racing, knowing my mom wouldn't call unless there was a problem. Julia is vomitting again. It is the third time in as many weeks. A pattern. Something is wrong. We leave.
A call into the doctor leads us to the emergency room. This time Jay will go with Julia and I will stay with the other children. The choice is never easy, it never feels good but we have come to terms with the fact every visit to the hospital cannot have us both present. I know Jay is as capable as I am in giving background info and answering questions, plus on this particular weekend he has something else I do not have. The ability to remain calm. (We would like to keep our good name at CCMC.)
A CAT scan shows Julia's ventricles are enlarged but this is actually a normal phenomena to Hurler children. There is no previous CAT scan available to compare this new one with so we are unable to draw any conclusion about whether the shunt might be malfunctioning and thus causing increased pressure which in turn could cause vomitting. There is also a question of whether Julia may be having slight seizures. Other fingers begin to point towards the hernia as the problem. After five or six hours Julia is released on the promise to followup this week with the neurosurgeon. We have an appointment for Julia first thing in the a.m. tomorrow.
This morning we had an appointment with the orthopaedic doctor. Last time we were there we were pleased with all good reports. Today we were not so lucky. Julia's kyphosis has obviously progressed in the past six months. I could not believe the change in the curve of her spine from our last visit. While the docotor is not quite ready to brace her he rescheduled another appointment in five months. It is probable that at that time we will have to move forward with a brace. He also discusses with me the back surgery that can be done to correct the situation. While he is not suggesting we do it right now neither is it totally out of the realm. From what I have read about the surgery it is grueling, involving incision in both the front and back, takes several hours to complete and leaves the patient in a full body cast. I just cannot even imagine...
Now for a bit of uplifting news...Julia's PPT went wonderful. All the reports from both her teacher and therapists were so positive and hopeful! We are adjusting her summer schedule to a more realistic and doable schedule. It has been determined that Julia will indeed need an LPN to accompany her to school come fall. I am grateful for this decision knowing that it will take a keen eye and knowledgeable person medically speaking to be completely in tune with Julia. Now if I can just get past the part of me that says if she needs a nurse she shouldn't be at school...With time we will know what to do.
We would be grateful for your prayers for Our Jules. Sometimes all the info gets totally overwhelming and we're scared, really scared for Julia. Please continue prayers for Nicky, our Saint Bridget friend and for Ryan, a Manchester native down in Duke recovering from a BMT...and for all the children everywhere that face some hardship. Thank you.
With love,
Patty
PS - Please be on the lookout for an article in the June(hopefully) issue of Woman's Day Magazine about our Hurler friend Molly Birmingham!
Monday, May 27, 2002 at 07:54 PM (CDT)
Dear Friends,
Happy Memorial Day!
As the days and weeks slowly wrap around summer we are finding ourselves anxious to fully immerse into the nonstructure mode, have fun and leave our worries behind. Lovely thinking, reminicent of childhood days, but in truth not overly practical! But, ahh, sometimes, just sometimes, it is the right thing to do. This was just that type of weekend and hopefully it was only a glimspe of what is to come this summer. No matter, today was very, very good.
Our Jules managed to scare us this past Wednesday with another eight hour stint of vomitting. Of course, this little episode was preceded by a very uneventful visit to the doctor with me proclaiming how wonderful Julia was doing. The irony did not escape us but served as a useful reminder to not let our guard down entirely.
With Julia, vomitting cannot simply be presumed a "bug." Ultimately, I run through a list in my head of what might be happening, contact a doctor and see what they say. In this case, I am concerned about possible malfunction of her shunt since it is the second episode of vomitting in a week. The doctor's office confirms that "intermittent shunt malfunction" could actually be a possibility. While they are ready to get her in for a CAT scan we opt to wait a bit and see what happens. So far, so good. Just the same, we have another appointment with the neurosurgeon etched in on our schedule this week.
Julia also has an appointment with the ENT for post-op checkup on her ear tubes. I am certain a round of hearing tests to establish a new baseline will be on our future agenda. Go get 'em Julia!!
We will see the orthopeidist(sp) for the first time in six months. I am prepared for a new set of xrays to be taken to gauge the extent of Julia's kyphosis and scoliosis but am hoping a simple run of the fingers down the spine by her experienced physician might tell us nothing has progressed. We are also anxious/curious as to what the stance will be taken on the possibility of splints for Julia's hands and possible surgery for what appears to be emerging carpal tunnel syndrome. There is an array of other surgeries most Hurler children face, including back surgery, knee surgery and hip replacement but I believe these are not in the picture for Julia.
Our week will end with another PPT to discuss services from the B of E for Julia over the summer. Because Julia's condition is degenerative she automatically qualifies for summer services. A PPT will give us an opportunity to discuss what will be appropriate for Julia during June, July and August and how we can best facilitate her schedule and that of her siblings. The thought of trying to coordinate it all is a little overwhelming right now though we know it always works out...somehow. Yup, we have that part down, for sure.
Prayers, all the way around!
Love to all,
Patty
Sunday, May 19, 2002 at 07:11 PM (CDT)
Dear Friends,
The happenings of Springtime have worked their way right into our life. It's busy and once again our time and attention is turned to the various activities of the day. To be more to the point, I will probably write less frequently or at least more randomly unless Julia's medical issues warrant more continual updating.
Aside from an evening of Julia vomitting, (which managed to un-nerve both Jay and I) we have been on an even keel and I might add, it feels great! Of course, it probably is worth correlating our stress level and the number of times we have appointments during the week. Is it any surprise that this week we had no visits to the hospital?
Home schooling continues. Julia experiences
a number of activities to keep her engaged and help her to reach her potential. In just a short few weeks our Miss Julia has managed to win the hearts of her teachers and therapists (no surprise to us.) It is so heartwarming to know that they have already developed an affection for her. Having the school system come here, to our home, has been a wonderful opportunity for me to demonstrate what Julia likes and dislikes, how to soothe her and answer the multitude of questions on what makes Julia tick. Sharing our knowledge about Julia will indeed be helpful come fall when she heads off to school.
Please continue your prayers for the sick and suffering. While we feel in a much safer spot than a year ago we understand the life change implications of illness on a family, as well as the healing power of prayer. Keep praying, pray loud, pray a whisper, sing your prayer, share your prayer, just pray!
Peace with all!
Patty
Thursday, May 09, 2002 at 08:24 PM (CDT)
Dear Friends of Julia and Email Buddies,
It's been quite a week for emails. Our computer caught the "Klez" virus and nothing on our computer has been quite the same. Ultimately, this virus grabs names off your mailing list and sends fake messages that appear to be real. It only takes the opening of one for your computer to catch the bug. Imagine my husband receiving an email about pornography from me? Or married friends titling emails to me with the heading "honey?" It was enough to keep me off the computer for a few days!! Beware!! Don't open anything with an attachment and be wary of funky titles. Does anyone know how to officially be rid of the virus??
In between dodging and explaining emails Julia has had a busy week. A visit into the clinic on Tuesday seemed necessary because she wasn't breathing right. Suffice to say another chest xray was taken and she was put back on round the clock nebulizers. Fingers are beginning to point towards the hernia as a culprit in these lung complications. It is not what we want to hear.
Julia's cardiologist visit today was peppered with new questions about how we should approach all these issues. Her various tests today gave us some information about heart function but not all of it. We were able to determine that there is thickening of the wall, as well as a mild to moderate leak of the mitral valve. Her overall heart function appears to be pretty good. However, without invasive procedures we cannot know for sure how much (if any) her coronary stenosis has progressed. The 70% blockage on the right ventricle and 40% on the left ventricle could be the same or worse from eighteen months ago. We could find out for sure by way of an angiogram but towards what end? It is not likely that any docotor would suggest bypass surgery for Julia. Ultimately, the doctor suggests that Julia's heart could most likely withstand surgery for the Morgagni (this was not even in question in our own mind...thanks for the scare,) that her hear meds be increased by almost double and that we meet every six months to continually monitor Julia's heart.
Welcome one more regular doctor into the life of Julia!
We thank God for all the wonderful connections we have made with people throughout the country! It's been amazing! Last night I spoke with the mom of a child who was recently diagnosed with Hurlers from Michigan. Today I received a note from someone I've never met (from CT)whose child received a BMT at Duke and knows people who know us, not to mention Miss Emma (the other Hurler babe from CT) lives right upstairs from them! We're all connected somehow...I guess that computer virus proved that!!! Very, very cool. Very, very God!
God Bless!
Patty
Friday, May 03, 2002 at 12:50 PM (CDT)
Dear Friends,
And what a performance it was!! I only wish Julia's doctors were there to see our star shine. Julia gave a stunning, private performance for all in the audience within earshot. She danced when it was time to dance, sang with the tunes and clapped appropiately. Not bad for a little girl who just two (three?) weeks ago was presumed not to hear.
While we are just a bit partial to own little girl's performance we would be remiss if we didn't mention the outstanding performance of so many Keeney Cubs. Not ones to miss out on the action Kristen, Elizabeth and Jamie all enjoyed a few minutes of stardom at the Keeney Variety Show. Jamie joined his buddy Evan and managed to steal the hearts of the audience singing "My Country Tis of Thee" and then led an audience of 250 in song (where is Ripley when you need him?) Kristen and Elizabeth appropriately sang "Let's Call the Whole Thing Off" by Gerswhin. Elizabeth also joined her girlfriends Sarah, Janie, Melissa and Molly in presenting "I Won't Grow Up." It was a delightful evening and witness to the incredible talent of so many Keeney Cubs.
Now, if I could learn how to act in front of the doctors we'd be all set!! A visit to the pulmonologist brought some news that I was totally unaware of in regard to Julia's Morgagni. I found the new info disconcerting considering we've been dealing with this whole issue for several weeks. In a nutshell, the doctor urged (gently, for now) to have the corrective surgery performed in light of implications
the hernia may have on the lungs. We will also have a pulse oxcimetry test done next week to judge the oxygen saturation levels of Julia while she is sleeping. This test will provide information about how well Julia is able to move oxygen throughout her system to organs. We're expecting no problems.
We also had a return visit to the opthamologist last week on the recommendation of another doctor that perhaps Julia was responding to light. Even now, so many months after confirmed blindness, it is difficult to imagine Julia's world of darkness and so sometimes we believe yes, she looked at us with a knowingness or that smile was deliberate in return for one given. The doctor's testing negated this. In fact, the more prominent motion of Julia's eyes moving backwards indicates that the disease is progressing. I return home with renewed sadness. Looking this disease straight in the face can be heartbreaking.
We have been contacted by the company Genzyme through one of our doctors. Though I reported last week that Enzyme Therapy was not available in the U.S. even under "Compassionate Use" the company is beginning to gather info on patients who in the future may be recipients of the drug. While we know nothing will happen with expediency Julia has been acknowledged! We have the satisfaction of knowing , however slow, our legwork is going somewhere.
Finally, we have met with all but one of Julia's new therapist and are genuinely pleased. I am thrilled we chose to have Julia receive home schooling because it is giving both Julia and me the opportunity to get to know her teachers in a comfortable environment. How much more secure we will be in the fall when it comes time to send her off to school...okay, I'm definitely not ready to think about that!
God Bless the families of Josh and Carly, members of the Hurler Family who lost the battle. We love you!
Peace,
Patty
Wednesday, May 01, 2002 at 09:47 PM (CDT)
Good Morning, Friends of Julia,
I managed to type an entire passage, get kicked off line and lose my entry. I'm not a happy camper this minute and far too cranky to redo this right now. I'll touch base later. Thanks for checking in!
Peace be with me,
Patty
Wednesday, April 24, 2002 at 09:02 PM (CDT)
Dear Friends,
A very warm thank you for all your wishes to our Miss Julia for becoming a terrific three year old! The kids have been reluctant to let her celebration end and are still singing "Happy Birthday" to her each night. What a crew!!
I want to take a few moments to update Julia's medical issues simply for the reason that I've been totally undisciplined about writing in my own journal and I do so want all this info for keepers.
On Monday, April 22nd Julia had surgery at CCMC to have new tubes put in her ears. While the surgery is routine any time a Hurler child receives anesthesia it's a big deal. We've been trained that way out in MN and no anesthesiologist touches Jules until we give all our precautions about Hurler issues. CCMC has had no difficulties with Jules" airways and we trust that will continue but as Hurler children get older the issues make anesthesia riskier, thus we will continue to give out any info we feel is pertinent or helpful. Jules was a terrible crankpot when she came out of surgery and the only thing that soothed her was leaving the hospital. Smart kid!
We have finally found a little more info about Enzyme Therapy here in the U.S. It's not available, even under "Compassionate Use." The six or eight weeks it took to get this bit of info is frightening. While I understand doctors have full caseloads and then some that's not really our concern. Julia is. Enzyme Therapy is available in Canada, Europe and Australia.
Lord knows where any of this is leading us but we know we have to continue to research all avenues to appease our own parental need to be doing something, to be proactive and keep hope alive.
The jury is still out on the "meeting of the minds" and Julia's Morgagni Hernia. Again, I feel things are moving too slow and begin to wonder "is it urgent?" or "not." Different doctors have differences of opinions. Eeeny, meeny, miny,mo....
It's official. Julia graduated from Birth to Three, a family based, therapy program through the state. For the past eighteen months our therapist friends Scott, Aggie, Stephanie and Christie have come to spend time working with Julia each week. These are the people who would listen to the minutest of details about Julia's health issues. They recommended and commended. They remained positive when I was on the verge of tears and offered up practical advice on how to make life with Jules work. They helped me navigate the system, sometimes patiently holding my hand when all the bueracracy made me crazy. They are the people I used to scurry around for making sure the house was clean until I became comfortable enough to say this is who we are and sometimes the breakfast dishes aren't done or there's laundry to fold or vacuuming to be done. They never cared. They were here for Jules. They helped her, they recognized the tiniest improvements, they loved her. Today they were our guests for lunch and each bearing a gift for Jules' third birthday offered up words of advice and wisdom but all said "please call and if you need anything..." Until our paths cross again...thank you. Thank you for everything!
Finally, a very special little girl from our parish Saint Bridget has been in the PICU at CCMC for the past five weeks. Her mom and dad have started a website to keep people updated and I'm passing it along to all of you with their permission. Please consider sending them a few words of encouragement in their guestbook. We know firsthand how uplifting those words can be. What a wonderful way of showing their family we're in this with them! Thanks! www.caringbridge.com/ct/nickic/index.htm
Peace!
Patty
Saturday, April 20, 2002 at 10:42 PM (CDT)
Dear Friends,
HAPPY BIRTHDAY JULES!!
It is a day of days. It is a holiday for us by any measure. Our Jules turned three!
As we celebrate: enjoying the antics of Valentine the clown, sharing good food and the presence of family we are deeply committed to the here and now. Life is good. Life is sweet...Our Jules turned three!
The pendulum of emotions leading up to Julia's day touches upon our gratefulness and our joy of celebrating this day. Undeniably, the sadness, that sometime lay too far beneath, gets a turn as well. In it's own way, the pendulum is precisely the reason we understand that today must be so very special.
Our morning begins with the unfolding of all the preparations of the day. Jamie finds the birthday cards he has hidden two weeks ago still safe under his pillow. The kids homemade birthday sign is hung on the wall, a few presents opened and of course the video camera is rolling.A quick breakfast out sets the tone for this day being different, for this day being special...Julia obliges with her beautiful smiles and occasional giggles. This day is for her but in many ways it is for us. We need to celebrate the goodness of Julia's life, now.
Twentysomething children and one awesome "Valentine the Clown" begin the festivities. It is wonderful to see such happy faces totally engaged in Valentine's "funnies." From three years of age to seventy three, she makes us all laugh. And we thought she was for the children!!The singing of "Happy Birthday" by our family wrap warmth and affection around Julia and in turn the celebration. A cake,candles and a little help blowing them out complete the tradition.
Our beautiful little girl has turned three.
Tomorrow we will have Julia blessed as she begins life being a three year old. A celebration continued. A celebration of life!
HAPPY BIRTHDAY SWEET JULES!
All our love,
The Moran Family
Saturday, April 13, 2002 at 02:25 PM (CDT)
Dear Fans of Jules,
While we normally look forward to the weekend to break up the intensity of the week we were exceptionally happy to have it arrive this week. "Where's the Advil?" was the phrase of the week validating our need to have a bit of "down" time with no demands. (Ha, let us know if you've figured a way out to do as much.)
Tuesday afternoon we completed two more visits to specialists. The Ears, Nose, Throat doctor saw Jules as a followup visit to the audiologist. After debriefing the doctor on Julia and her disease a short examination of her ears is given. Findings: she's not hearing. This time I dispute the findings aloud. Julia IS hearing. This is not some form of denial on our part. We know she hears. The doc backs up a bit to explain he doesn't know Julia and gives me a demo of the different decibels that she may be able to hear at. I like this doctor very much...I only feel concern for the parent who does not dispute
findings and leaves feeling sickened with the info imparted to them.
Bottom line...we are not sure if Julia's tubes are still working correctly. On April 22nd she'll undergo surgey to have new tubes put in. Followup tests will demonstrate if this was the issue at hand or if there is more happening that we need to keep an eye on.
Her dental visit is not as bad as I anticipated. A good cleaning and a checkup in six months seems to make the dentist happy. Not having to do the cleaning under anesthesia is a huge relief.
On Friday we had Jules final PPT for school transitioning. Thirteen people plus Jay and myself set a plan of action in place for Jules. While the meeting went relatively smooth both Jay and I feel the tension of change. After more than eighteen months of being serviced by Birth to Three we will need to say goodbye. More on that next week...
Finally, we have yet to make a decision in terms of Julia's hernia. Though we are digging deeper and consulting with a few doctors the answer is not clear as of yet.
We will keep you posted as needed.
Enjoy the beautiful weather! We are thrilled with all the outside time bestowed upon us and have been busying ourselves with outdoor cleanup and planting! Woohoo! The warm weather is here!!
Peace!
Patty
Monday, April 08, 2002 at 01:24 PM (CDT)
Dear Friends,
Our biggest appointment of last week was a visit to the pediatric surgeon in regard to Julia's Morgagni Hernia. Our biggest diasppointment of last week is not having a clue as to what we should do in terms of it. On the one hand the doc told us he is "not recommending" it but on the other hand is he "not not recomending" it. Hmmm...gotta love the medical clarity in which advice is given to us time after time.
Any data we've examined seems to point towards having the surgery done electively because as I have already mentioned an emergency situation would not be good. Post operative recovery and rehab appears to be lengthy and this does not even take into consideration all the trials and tribulations Jules has already faced. I'm certain you understand our ambivalence about such a procedure. Ideally, we would opt for laproscopic repair which patients tend to recover from faster but doctors can't determine whether it can be done laproscopically until they're in surgery. This has left us researching hospitals/doctors that might have a certain expertise in laproscopic repair/diaphragmatic hernias/anesthesia for breathing airway disorders. Going out of state or even back to Minnesota for this procedure is disconcerting but we will do whatever is best and safest for Julia. More conversations with doctors and a little more research intermingled with prayer will lead us down the right path.
Between specialty visits to doctors, Julia's final PPT for school transitioning and major surgery looming overhead we are on overload. It is difficult to always sit in a place of optimism when everything points against that optimism. I suppose that's when you let faith take over.
The kids have welcomed Spring with open arms. Afternoon games of basketball, bike riding and tree climbing have overtaken the desire to be inside (thank goodness!) The neighborhood reverberates with the laughter of children, kerplunk of the basketballs and shouts of "Mom!" Spring, it's our favorite time of year (next to summer, fall and winter!)
Peace,
Patty
Sunday, March 31, 2002 at 07:58 PM (CST)
Dear Friends,
The Lisas of our life have been a true blessing!!! So many have traveled this journey with us in various ways...Each and every role that our friends and family have had in our lives have been equally precious. A warm "thank you" to Lisa, a very special friend and to all of you who have in any way been a part of our life.
Jules had the first of her many "specialty" visits this past week. Audiology ran three different tests on Julia's hearing. Way back "when" we got a baseline of her hearing on record. There was a little concern about her right ear but nothing that suggested a sense of urgency. (Looking back to that time her hearing issues were down low on the totem pole of importance.) Thursday's test reiterated issues with the right ear and now the left ear. Do I need to describe the pit in my stomach as I watch the computer spit out info I don't want to see? (Please God, please, not her hearing!) I am immediately reminded of what we believe about her hearing. We know that she hears us! We know that she is responds to our voices with smiles and music by joining in with song. We know this! My inner resolve returns. While the tests certainly alude to some problem (maybe her tubes need to be replaced) it is way too early to feel defeated. We are scheduled to see an ENT next week and surely the doctor will shed some light on what we may need to do.
Julia has been doing so well. It is a joy to just do life! Occasionally, we will find ourselves seeking more from God. If only she could see...or if only she could walk...if only...and then we are reminded of all that we have been given thus far and our posture becomes one of gratitude. Our life really is very good indeed!
This morning at Easter Mass we were brought back to Easter a year ago. In the seat next to us Julia's nurse sat down. How fitting to be reminded how far we have come on Easter Sunday! Michelle was thrilled at how well Julia looked and I was delighted to have her see the fruits of so many caring peoples' efforts, including her own! Two very central places of our life: CCMC and St Bridgets, brought together...pretty awesome for us!
With Spring in our midst the days have become very full. While we are committed to not getting in over our heads we are also committed to living life as wholesome as we can. The Variety show, The Funtime Fair, t-ball, soccer and track are all on the horizon, as well as birthday parties and communions. Joining in and being a part of it all has been great for us. Embracing life and letting life embrace you should never be underestimated!
Happy Easter!
Much Love,
Patty
PS How about them Huskies?
Tuesday, March 26, 2002 at 09:46 PM (CST)
Dear Julia Moran Fan Club Members:
Since things have been pretty uneventful in the Moran household, Patty has approached me with the inquiry if I’d be interested in using an opportunity to post a message on Julia’s web page. To say the least, I was excited at the prospect and flattered that she and Jay would trust me with such a valuable resource!
I must admit, with this keyboard beneath my fingers, I am nervous about what I should write and why I should write it! I could sit here for hours and still not be able to convey my thoughts as eloquently as you have become accustomed to reading from Patty and Jay. But, I will do my best…
Some of you are family and friends of the Morans and some of you are mere strangers, directed some how, some way to Julia’s web page. Some of you know me, and some of you know me only through your own web page guestbooks. But one thing is for sure, we all feel connected. Some of us are unwitting, yet honored, members of the Hurler Family Tree and some of us are exclusive members of other branches of “rare disorders”. It does not matter…our roots are intertwined. Our strength is born directly from reaching out to each other and grabbing on. With God as our comfort and faith as our rock there is nothing we cannot endure. The blessings of loving a special child.
So, who am I? How am I involved? A friend. Simply a friend. That’s all I was to the Moran’s until that day in September 2000 when their sweet little baby girl became a validated Hurler member. None of us will forget that day…the phones were ringing, each friend delivering the devastating news to each other. The disbelief, the pain, the tears…and then... the blessings. Yes, blessings. From that day on something grabbed me in the core of my being…the core of my life. Different thoughts flooded my mind. What do I say, what do I do? Immediately some of us knew we needed to pray like we have never prayed before…and we did. In addition, I wanted to share with the Moran’s my own experience of growing up with a “health challenged” sibling. Maybe I could offer some advice, or at the least, empathy for Julia’s sisters and brother. Not only had I lost a younger sister to a congenital heart defect (she was 6 months…I was 2 ½, but remember the experience distinctly), but I also had an older sister who passed away at the age of 27 years, also from congenital heart defects and subsequent complications. I understand from first hand experience what it is like to grow up under quarantine, in and out of hospitals, surgeries, and never being able to take a family vacation. It was not a “normal” childhood…but it was “my normal”. It was not devastating, it was manageable…and it was fun!
I have plenty of fond childhood memories…yes, the emergencies are remembered too, but they are NOT at the forefront of my memories. Not at all. I also wanted to share my experience of hope and faith when doctors don’t necessarily offer that. As I mentioned earlier, my sister, Lori, passed at the age of 27. When she was 6 months old, the doctors told my parents to take her home and love her, “She won’t live to see her 1st birthday.”
HA!!! What those doctors didn’t count on was the faith of a mom and the will of a child!!! Nothing is impossible…not with some determination and faith in a merciful God! There was no miracle surgery nor miracle drug. Her own little body compensated and the doctors were perplexed. WE WERE NOT!!!
I knew I wanted to pass this message along to Patty and Jay. What I didn’t know was that little Julia was about to enter my heart and expose a part of me that I would have never imagined. I hit the internet looking, searching for anything I could learn about Hurler Syndrome so I could understand what this special family was about to embark on. What I found were other families in various stages of the disease, various stages of bone marrow transplant. Beautiful families. Loving families. Families, who in the midst of their own challenges, were reaching out to me and the Morans!! Offering support, advice, encouragement, faith, hope and LOVE! These were strangers and they were answering my very first emails signed “LOVE”!!!! And from that moment, that was it….I became a part of this family. Just as you all have reached out to Patty and Jay, I continue to pray for each and every one of you. Each one of you and your children have taken up residence in my heart. Whether there are the little joys or heart-breaking sorrows, I thank you all for letting me be a part of your lives. A few of you have suggested I start some sort of web page to connect us all. A “Friends and Family of Hurler Children” support page. I am giving it serious thought. I just need to figure out how to do it!!! Any suggestions??
As I revel in Julia’s delightful giggles, cuddly disposition, and reminiscent determination, I feel so lucky!! Fortunate and blessed that this innocent child has brought so many of us together…foremost, herself and her incredibly inspiring parents into my life. Thank you, Jules! I will love you forever!
Love and faith,
Lisa Post
Thursday, March 21, 2002 at 09:57 PM (CST)
"Hey hon?"
"Who me?"
"Yeah."
"Did you get up with Jules last night?"
"No. Did you?"
"No."
Such was the most important conversation of the week. Our Jules slept through the night...make that two nights now! And did I forget to mention she was in her own bed too? Yipee!! A good nights sleep without interruption has been extraordinary in helping all the Morans be happy. Nothing worse than a cranky mom and dad! Thank goodness Jules was getting tired of our attitude and did something about it. That's our proactive kid!!
In terms of healthcare there's not too much to report. Jules seems to have fully recuperated from her last bout of asthma/cold/breathing issues and looks wonderful. A quick visit into the clinic for immunizations today will do it for a few more weeks until all our specialist appointments kick in.
Doctors have agreed that Jules is better off being "home schooled" for the time being until all of her health issues are fully addressed. Jay and I are both in complete agreement. Neither one of us is ready to send her off to school. Who can better care for her, love her, understand her and teach her than us? Our final transition meeting will be in mid April at which time it will be decided what kind of home services Julia will get. We are certain that everything will work out just fine.
During our PT session Scott broached the subject of "chairs" for Julia to help get her around once she is in school. It will actually take three months to acquire a chair that is specifically designed to meet the needs of Julia. As I have struggled carrying Julia for any length of time these past few months I knew this was inevitable. But I'm not ready to see my child strolled around in a wheel chair...I'm not ready. We believe we are living the reality and yet so much of us is resistant, fighting every step of the way. "Acceptance" always comes with a price. We haven't given up hope of Julia walking more independently and won't until it is clear to us. Until we are ready.
We are very in tune with the needs of so many families here in CT, across the U.S. and even around the world in the midst of medical crisis. Please open your hearts to them during prayer.
Peace,
Patty
Thursday, March 14, 2002 at 09:35 PM (CST)
Dear Friends,
Our challenges this week have been few, relatively minor and similar to that of any parent but sometimes it is the little things that we let get out of perspective. Perhaps it is a sense of self importance and a blind eye to the big picture or maybe it's just that the "little things" really do matter, bringing light to the bigger picture. No matter. For us, the balance to not minimize what Jules is faced with and yet not let it totally consume our very being continues. Had I known in my younger years how important balancing everything is I would have gotten myself a little training at the circus.
Our steroid induced Jules has been insatiable. In just eight days time we have watched her belly round and her cheeks chub. Offerings of Cheerios and crackers have been added to her schedule round the clock, along with a continual flow of apple juice. Steroids have proven once again to make Our Jules fairly miserable. Her giggles and smiles have been transformed into demanding cries or tantrums causing us to dance until we find the right "whatever" to make her happy. It's been a long week...and yes, I know, I'm whining.
It has been a week to regroup. Julia's non sleeping adventures at night meant she slept in late in, which in turn meant lost therapy sessions. Recouping after her illness also means staying away from the general public, minimizing exposure to anything else that might invade her system. Again, we find ourselves balancing being paranoid about anything she might happen to "catch" and realizing that living in seclusion isn't going to be a healthy option either.
Over the next several weeks we will be working with many specialists to get baselines on a variety of systems. We are not anticipating any surprises and see this more as a formality to continue to monitor Julia's overall health. We've also intitated a second opinion in regard to Julia's Morgagni Hernia and already have been given the nudge to go back to Minnesota (or a like facility) to have the procedure done. Time, patience and prayer will bring us the right answers...that is one thing we have learned to trust fully.
We thank God for beautiful days like today when your heart sings of spring and awaits with joyful hopefulness the arrival of earth's first flower. For us, it is a promise of renewal and goodness being answered. For us, it is hope!
Peace,
Patty
Friday, March 08, 2002 at 08:19 PM (CST)
Dear Friends,
It has been a week punctuated with worry. On Sunday and Monday we were worried about Jules choking everytime she ate or drank. On Tuesday, I was worried about her cough. On Wednesday, the feeling of worry continued letting me know that despite the fact Jules had an appointment on Thursday that my mind and heart needed to be put at ease now. Her flaring nostrils along with her tummy working hard with every breath were signals to be wary of.
Once at the clinic we are sent for another chest xray which clearly showed there was no pnuemonia. However, the xray does indicate that her Morgagni Hernia has grown in size in just three weeks time. This is cause for concern and teamed with her breathing issues we are admitted. Ultimately, Julia has respiratory airway disease (RAD), (a fancy name for not breathing to well,) is monitored for SAT levels, put on oxygen and monitored for 24 hours in addition to a round of new meds.
In regard to her hernia, we are given a brief consultation about the severity of the issue and what we might expect in the next month or so in terms of surgery. But the jury is still out. The surgery would be major for our Jules and would include a PICU admission. Not doing surgery could leave us in an emergency situation that would be extremely dangerous. The good news is that we (think) have a little time to gather information, get a second opinion and then make a decision that we think is most fitting for Julia. It has been over three months since our last admission and we are immediately reminded how draining hospital life can be. By 9:40 I am in bed...9:43 asleep.
Just 24 hours after being admitted to CCMC we are released. Jules already seems better with the help of five new meds including, Decadron, Xopenex, Atrovan, Zantac and Afrin. Since her pulmonary issues are resurfacing we will be having some direct contact with the docs in this department. There will be several discussions in regard to the hernia. Just when we think life is settling...
Thanks for your kind notes about the website. Please continue your prayers for all families in the midst of medical challenge. Thank you!
Love,
Patty
PS - Our server has been down for two days, thus I haven't been able to answer e-mails.
Friday, March 01, 2002 at 10:23 PM (CST)
Dear Friends of Jules,
Our days have been very full and time on the computer limited. In the case of updates on Julia's website "No news is good news." And so our updates seem to be stretching out further apart, leaving me contemplating ending them altogether. However, a conversation with our Connecticut friends who headed to South Carolina with their Hurler baby, Emma, this past month has me thinking twice about that decision. Liza said that everyone down there (Duke BMT patients)know Julia from her website. I can't help but think that some other family faced with what we are faced with may draw some good from our own experience. We do not pretend to have all the answers nor do we do everything right but we try, we really try. If something we share from our journey is helpful than all the more reason to keep sharing. The community of Hurler families continues to grow and our stories are as different as they are alike...the web helps give life to the experience.
Let's see...Monday I visited Buckley School in anticipation of our transition and was not at all surprised by the expertise and smoothness of the program. Even so, we are definitively not ready for this transition in April. We need more time to just let life be.
Jules has had a wonderful week in terms of therapy. During speech Julia imitated every name or word that Jamie initiated. Even though the list of words was short, it was exciting to have the therapist witness it firsthand. Ultimately, it is encouraging to all who work with Julia to know there is potential for learning. In P.T. Julia's gross motor coordination (walking) is slow in developing but again the potential is recognized. We are trying her out in various walkers and though she isn't quite ready for that, no one is closing the door on her. Hope lives.
We expect that Julia will be getting splints for her hands soon. This posed another dilemma for me. Do we impinge her hands in order to help her hands?
The answer for us is to have her wear the splints at night freeing them during the day. If we do nothing she will lose the capacity to use her hands altogether. For now this is the best answer.
Our search to get our hands on Enzyme Therapy continues. It will not be an easy process, everslowed by the fact that we must depend on others in the medical field to do the legwork. Time is of the essence. Our impatience to make a move won't be matched by anyone. Whoever said "patience is a virtue" was wrong. (A weight has been lifted from my shoulders!)
Julia is such a happy little girl. Please know that! Her smiles, her laughter, her little scrunched up funny face are all glorious to behold! And her kisses, they're the best! She opens her mouth and with all the love she has she slops all over our faces! She may be slow to learn to walk or talk but her lesson of love has been learned so very well by us, her family. Thank you Julia!!
Please keep Miss Emma and her family in your prayers as they approach admittance to the hospital for chemo. Also, Miss Susannah had a tough week and could use a few extra prayers. Thank you!
Kisses from Jules!
Love,
Patty
Thursday February 21, 2002 9:15 PM CST
Dear Friends,
A week between updates leaves me with much too much to write. I will try to be concise and leave out the mundane but I will make no promises.
Well Julia almost made it! We were one day shy of a full month without seeing her primary care doctor. On Tuesday I felt as if Julia's cold had escalated into something more serious. Her breathing was a bit labored and her lungs didn't sound good. Jay reminds me that we cannot over react when it comes to Julia and this is totally supported by her doctor once we make it to clinic. Dr. Hagstrom believes its pnuemonia and asthma. After a breathing treatment in clinic her sat levels (amount of oxygen getting to he organs) remains at 94%. We would have expected it to be back at 99% to 100% after the treatment and so a chest xray becomes mandatory. The xray shows nothing significant and so Dr. H is comfortable sending us home with round the clock albuterol treatments, zythromycin (antibiotic) and decadron (steroid to open up the airways.) Though a deep cough persists I think Julia is doing much better.
Today we met with Dr. Rosengren (geneticist)for the first time in eighteen months. It was difficult thinking back to our first meeting and I find myself not looking forward to this appointment. My fears are totally unfounded. I like her as much today as I did eighteen months ago remembering how she balances medicine with compassion for both patient and parent.
Dr. R. will be instrumental in acquiring information on "Compassionate Use." Because my name is missing "MD" at the end I had run into a brick wall in making futher inquiries about Compassionate Use for Enzyme Therapy. It feels good to pass the baton off knowing that she will have connections and access to people/information that I never would get my hands on.
After a briefing on Julia's history we target four doctors that Julia must see in the near future. An audiologist will hopefully help Julia maintain her hearing or at least make sure she maximizes this sense. A pulmonologist will give us a new lung baseline, particularly important after the events of this week. A dentist is needed. Julia's teeth (like all Hurler children) are not good and need to be maintained for her own health and comfort. Finally, it has been suggested that Julia see the opthamologist again since she has shown some response to light. Round and round we go.
Thank you for your continued prayers. As much as we have become accustomed to our new life there are times when it's still hard and overwhelming. Knowing that there are people out there rootin for us is helpful. Thank you!
Love,
Patty
Wednesday February 13, 2002 12:14 AM CST
Dear Webbies,
Ten burning candles (one for good luck, of course) and twelve anticipating faces, under five feet tall, set the stage for Elizabeth's ninth birthday. Childrens' birthdays have a way of bringing the meaning of time into focus. We welcome the festive occasion to be family, let loose and have some fun. Elizabeth is pleased as punch at being princess for the day.
Our other princess, "Miss Julia," keeps us on our toes. After realizing that the FDA is going to need some prompting (and that is a major understatement) to push through the approval of Enzyme Therapy I busy myself firing off letters to local and state reps seeking their help. My letter writing campaign is quelled upon learning that the application for approval of Enzyme Therapy has not even been submitted.
Several phone calls lead me to Genzyme, a developer and researcher of the drug, in conjunction with Dr. Kakkis and another biotech company called Bomarin. I want to know the status of the program. Status? They are presently compiling their data and hope to make the application to the FDA in the next six to nine months. I do not like that answer.
Futher inquiry leads me to something called "Compassionate Use." On a person to person basis drugs that are deemed possibly helpful to a person in a desparate situation may be relinquished prior to FDA approval. Of course this has to be all physician initiated and upon calling on Julia's doctor for his help I can tell he is less than thrilled about being a key player. While I understand his stance and even accept it I am not happy about it. Julia needs a doctor, one doctor that will pledge themselves to her overall care and advocate when needed, all politics aside. The medical world can be difficult to navigate and while we are deeply grateful for the healing hands of so many it is not a perfect world.
Julia's therapy has been going well. This past weekend she even stood completely unaided for a few seconds. Each morning we strap on her little pink braces and several times throughout the day we practice standing and walking. As I kneel before Julia with her hands gently placed in mine I am in awe of all this little girl has gone through and been able to accomplish. We believe...she will walk again.
"I have called you by name: you are mine...I will be with you...because you are precious and glorious, and because I love you." Isiah 43:1,2,4
We believe!
Happy Valentine Day!
Patty
Tuesday February 5, 2002 8:15 PM CST
Dear Friends of Jules,
While continuing our search to find "enzyme therapy" for Julia we were led us to Dr. Emil Kakkis (another leader in enzyme therapy for MPS) out in California. We've read a bit about his studies, heard he is approachable and willing to talk with parents about enzyme therapy.
His answers to our questions mirrored Dr. Munsers, but with direct contact our own understanding is better. Enzyme therapy isn't offered to post bone marrow patients because it will skew the results of all the scientific data. Temporally, that is understandable. Emotionally, it is not. Dr. Kakkis seems reasonably certain that if the drug is FDA approved that Julia should be able to access it like any other child. The question now remains of when the drug will be approved. Dr. Kakkis seems less than certain about that. Enzyme Therapy will not be a miracle drug but it is the lone burning candle shining bright. We are not naiive about what is happening to our Jules but without hope we have nothing.
Our first outpatient PT at CCMC left me feeling a little deflated. Julia is tired, cranky and not up for doing anything. Though I can't read minds I'm pretty good at faces and know Amy was hoping for more. Our goal of having Julia walk feels silly there in the therapy room and I realize that I cannot give into that kind of feeling. She flips Julia around so she can "look" at herself in the mirror. I am gripped with sadness at having to explain that Julia cannot see and embarrassed for the physical therapist at the same time. I am glad our first session is over and wonder if we made the right decison to push for more therapy.
Today we do our own therapy. Julia is happy, she stands with assistance several times with her back straight and feet flat. Everything we do becomes a slow motion process of letting Julia go through the motions. To get off the bed I help Julia roll over, slide her belly over the side of the bed until her feet hit the ground and once she stands resting against the bed clap "You did it, yeah, Julia!" I realize that all of our days must be handled in this fashion if we are to get Julia walking. We're ready and committed!
On the social side of life our kids were delighted by an ivitation to go watch the UCONN Womens' Basketball Team during practice and thrilled that each player took a picture with them, spent time chit chatting and signed autographs. Pretty cool stuff when your a kid!! (Okay, I know you big kids think its cool too!) Jamie just finished up basketball and is already asking about "t" ball because all the guys at school are playing. Kristen and Elizabeth are trying their skills out at iceskating and loving it! Jay continues with refereeing (just three more weeks) and I have donned my bathing suit(ugh) for some exercise (and relaxation)a few times each week. Maybe I should give my new Years Resolution for Lent?
Hugs all the way around!
Patty
Wednesday January 30, 2002 9:49 PM CST
Dear Webbies,
Great big hugs from Julia to you for taking the time to offer a few kind words to Alexis' family! Julia was in an extra good mood yesterday and now I know why...our friends are so generous with their love!
Tomorrow marks one year since we returned home from Minnesota to Connecticut. There seem to be a lot of "trigger" dates for us and while we don't want to dwell on them we certainly do not want to forgo the value of recognizing them as important in our own life. We will have a small celebration, look back at our pictures and share stories of life in Minnesota. The kids have lots of stories but not many opportunities to share them. Bits and pieces of what they remember give us a better sense of what their experience was...through their eyes.
At our request Dr. Rosengren contacted Dr Munser (head of clinical trials on enzyme therapy) to find out exactly what we might hope for or expect in terms of future treatment for Julia. His answer was less than satisfying. They don't (or won't) do enzyme therapy on post bone marrow transplant children. Of course, we haven't had an opportunity to work on him yet. Ethically could they actually say "no" to Julia if it is FDA approved and proven to help Hurler children? I'm not quite sure of that answer yet (and perhaps I don't really want to know) but we will be delving a little deeper until we are satisfied all avenues have been thoroughly researched and questioned.
Dr. Rosengren (geneticist)will be coming into the picture a little more now that Julia's issues are not hematology related. It will mean another transition for Jules but to be fair to her present doctors we are asking way too much in terms of a disease they know little about. Dr. Rosengren will be able to anticipate Julia's needs and guide us along to the next step.
Next week we will step up Julia's physical therapy. We will have two to three more appointments a week at CCMC on top of her present therapy. We believe we have a window of opportunity to get Julia walking.
I sense therapists may think we're a little "off" on this push but nonetheless I know we have to do what we think we have to do. Certainly we have a respect for what is offered and shared by professionals but the bottom line is we think this is the right thing to do.
Our newest Hurler friend Emma from CT is headed to Duke for an "unrelated cord transplant." It is a time of great ambivalence, fear and hope. Please say a little prayer for Emma and her family. I've also added a link to the website of Miss Susannah. Her mom, Amy and I were so struck by the similarities of our daughters health issues that we began tipping each other off about what to expect next and have become fast friends in the process (tricky business when you live on opposite coastlines...hmm, a trip to San Diego just might be in order!)
Thank you all for everything!
Love,
Patty
Saturday January 26, 2002 7:41 PM CST
Dear Friends,
Our little Hurler friend, Alexis died yesterday afternoon. When one Hurler parent loses their child all parents with a Hurler child lose a child. It's the nature of this disease. We walk the walk together always knowing that by some twist of Fate our own child is still with us now but that the future of the disease (or ravages of a bone marrow transplant) has it's own agenda. Make no mistake the disease is as horrifying as it is heartbreaking. But the process of our lives living with the disease gives way to beauty. I am certain I will never know another being who has taught me so much as Our Jules. We are called to look deeper, to live more fully and to love without condition...Jules has made that easy.
The Wiggins Family returned home to Kansas today. Home without little Alexis in their arms. Home without the smiles and giggles of their baby girl. Home to a life that is completely different from what they believed when they first embarked upon this journey. Please continue to pray for the Wiggins and/or drop them a note in their guestbook at www.caringbridge.com/ks/alexiswiggins. I know the thoughts of so many will be uplifting to them! Thank you!
Peace,
Patty
Wednesday January 23, 2002 7:01 PM CST
Dear Friends,
Our "transition" meeting last Friday was extremely educational and gave us a real sense that we are still in control in regard to either sending Julia to school or pursuing other options such as home therapy once she turns three. It was a relief to know we have options and that any decisions we make are certainly reversible if they don't seem to be working. I believe the school system now has a better sense of who Julia is, as well as what our philosophy towards her life is. Under all the special circumstances that surround Julia I have found there to be an authentic openess by educators and therapists to accomodate both Julia and our family in a way that is most helpful. We still hold the reins! Amen!!! !
On Tuesday night I attended my first meeting for parents of special needs children at Buckley School. Occasionally speakers will come in to speak to parents about topics unique to this special population. Last night I learned a little about the "Boundless Playground" (designed specifically for and by special needs children) slated for Northwest Park, as well as heard new info concerning DMR services. There is so much to absorb and understand that I welcome the opportunity to be with other parents with similar concerns.
Today Julia had a CAT scan to verify that her shunt is working correctly. It is!! We also did blood work and Julia received four immunizations. Her platelets are at an awesome number of 166,000 and all her other lab work was normal. Wow! I also made the bold move of scheduling an appointment for a month from now. Can it be that Julia is actually going to be independent of her primary doctor for a full month?
We have been reminded once again of the miracle of Julia. One of our Hurler friends, Alexis, is so very sick. I actually met her mom, Jodi, via e-mail while they were making plans to come to the Ronald McDonald House for Alexis' bone marrow transplant last January. There is something that comes naturally in our relationships with parents who have children with Hurlers. I am sure it is the common bond and intimacy of experience but none can doubt the friendships with those we have never met or met only briefly. Again, we find our own hearts breaking as we journey with the Wiggins' Family through these very painful days. Please hold them close in prayer.
Love and peace,
Patty
January 15, 2002 9:47
Dear Friends,
The past several days have been uneventful for Jules! This is GOOD NEWS! I have a sense that we are in a phase that will be unmarked by drama! Believe me, nothing could be more welcome and needed. Though we have had a relatively calm month we are just starting to let ourselves believe that "monsters" aren't lurking behind the next corner. Though we are afraid to let our guard down too much we've managed to snatch every bit of good and fun possible each day!
Tomorrow will mark her first visit in more than two weeks to the doctor. Her appointment will include her second flu shot, plans for immunizations, (if needed)an overall assessment and a barage of new questions for the doctors by me (lucky them!)
We are continuing our search and research on "Enzyme Therapy". The bottom line is that "Enzyme Therapy" should be FDA approved within the year. Definitely too far in the future to make plans and difficult knowing that something that could help her now is not available. We have come to accept so much of Julia's future and yet the desire to "keep going" or "find something" doesn't go away. Do any of us ever want to accept that which we do not like? I suppose being "at peace" with our decisions is the ultimate goal. It's hard to know if we've arrived (which probably indicates we haven't.)
Our big "transition" meeting is this Friday. Jay and I will meet with eight or nine people representing a variety of services including Birth to Three, BESBE and Special Education Services for the Manchester Board of Education. The meeting will help the Board of Ed in planning for Julia's arrival into the system, as well as give them a better understanding of our own wants, needs and desires for Julia. I am hopeful that we can all be on the same page as that will make for a smoothe transition.
A heartfelt "thank you" for your continued support and prayers throughout.
Love to all,
Patty
Wednesday, January 09, 2002 at 08:35 PM (CST)
Dear Friends,
Our Jules has been doing so well this week! It is now a regular course of action for me to stand behind her holding her hands and walk with her ten or fifteen steps several times a day. Occasionally she even moves her leg to take the next step without me shifting her weight. This is all so awesome because I know the doctors didn't have high hopes for her to walk again. We did! Her physical therapist did! Goal = Accomplishment!!
I was reminded of setting goals once again yesterday morning when Jamie and I set out to make a batch of chocolate chip cookies. I thought Julia could entertain herself or listen to music while we busied ourselves making the cookies. But no, that didn't sit right with Jamie. He wanted Julia to make the cookies with us! A little creativity did the trick. Julia sat in her highchair with a spatula, some wax paper, a spoon and of course a few chocolate chips to snitch. To make it official we wrapped Julia's hands around the mixing spoon and stirred the batter for a few seconds with her. These were the best tasting chocolate chip cookies ever! Thanks, Jamie!!
Jules has been letting us know she understands many of the things we're saying. When Jay kisses her goodbye in the morning she throws a little tantrum. I am so grateful for this tantrum of recognition!
If I ask her if she wants to go "bye bye" she starts smiling, waving her arms and legs in a gesture that tells me, "Let's go!!" It is the same with her baths. She knows what a "tubby" is and can't wait to get there. While all of this seems simplistic, in Jules little life it is monumental!
A couple other milestones have been bequeathed upon Moran family members. Kristen officially belongs to the "tinsel tooth club" and looks absolutely beautiful!Jamie learned to tie his shoes after only two attempts, (there is so much to be said for waiting until one is ready!) He managed to amaze himself with that accomplishment and his reaction was almost as good as seeing Santa on Christmas Eve! Three cheers for rites of passage.
We continue to pray for peace in the world at large, as well as in our hearts.
Love,
Patty
Friday, January 04, 2002 at 08:40 PM (CST)
Dear Fans of Julia,
Since my last two entries were more about the tone of life here round and about the holidays I thought an update about the happenings in Julia's life was warranted.
Julia finished her ten day stint of Bioxin to ward off pnuemonia only to be assaulted by another cold the next day. After a night or two or of worrying about her cough Jay and I deemed a call into the doctors was necessary. Of course timing is everything and January 1, 2002 wasn't exactly the day I would choose to wheel and deal with the docs. But such is life. After a lengthy conversation it was determined that she probably had croup and a steroid (Decatron or a derivitive thereof)might help open those airways up. The med did indeed help but some deep cough persists. The consensus seems to be "everyone is sick."
Our followup visit with the neurosurgeon went without a hitch. Everyone is in tune with how much happier Julia seems to be with the shunt. Next month she will undergo a CAT scan to see what effect the shunt has had on her ventricles and that all is well on the inside. We are anticipating no problems.
In terms of therapy we are still hopeful of getting Jules up and walking. As of the past week or two I hold her by her arms and she actually puts weight on her legs! Helping her just a little I can get her to walk five to ten steps before she collapses. Of course all this is done on her tippy toes as her achilles has tightened up and needs continual stretching. I also inquired about some intense inpatient therapy for a couple of weeks. It is not that we are eager to be back in the hospital but we believe the intense therapy could help her attain the goal of walking thus improving the quality of her life. It's not our call though (ugh!) and we will need doctors, therapists, insurance and hospital admissions to agree that this is the way to go.
Julia's speech has been difficult to assess. On some days I feel she isn't doing as much as she used to and then out of the blue she'll respond to the ringing of the phone by saying "hello," or tonight we're sure she said to Jay "I love you," perhaps not crystal clear but definitely in the same sing song way her dad says "I love you" to her.
Our little friend keeps us guessing. The only certainty is uncertainty and of course, the love that resonates from our Jules.
Peace to all,
Patty
Sunday, December 30, 2001 at 08:36 PM (CST)
Dear Friends,
As we prepare for the shades of darkness to lift for the final time in the year 2001 I am finding myself in a place of reflection. It is hard to believe all that has transpired in our lives this past year and rarely do we look at the whole of the past twelve months. Even tonight as I begin contemplating January 2001 and move from Minnesota in my mind to home that is enough. There is enough to think about, enough to gather in, enough to grateful for, enough to be saddened by. Looking back can be difficult, looking ahead can be difficult and so we live now, simply in this moment. It has been a year of lessons about life. Lessons that have forever changed our lives, lessons that have forever changed us. It is not what we would wish or hope for anyone and yet we would be untruthful if we denied the riches of our experience. And so in a few very unpoetic words we will share what we learned in 2001.
We learned that home is where your heart is or as a friend taught wherever you hang your toothbrush.
The secret of life is a good cup of coffee.
Living in a room with six people is not romantic.
In the midwest if you ask for "pop" you won't get your dad.
There are caring people everywhere.
We all need God.
Hugs are always welcome.
Our families couldn't be everywhere so God created the Ronald Mcdonald Houses.
Bald is definitely beautiful!
A child's smile can light up the world.
If you have your health you have everything.
There's no place like home.
Sleep is a luxury.
Sometimes the wisest words are spoken by children.
Prayer soothes the soul.
Laughter really can be the best medicine.
Our friends and family have strong shoulders and big hearts.
Computers are the link to the whole world.
One pint of blood can help save up to three people.
One little life can touch thousands.
Living in the moment is a gift.
If you have faith, hope and love you'll be okay.
Happy New Year!
With continued hope for Julia in 2002!
Jay, Patty,
Kristen, Elizabeth, Jamie and Julia
Wednesday, December 26, 2001 at 08:50 PM (CST)
Dear Friends,
We hope you and yours had a wonderful beginning to Christmas, blessed with the presence of family and friends. Our five weeks of perpetual motion came to a quiet and welcome end this morning as we slept in a bit later than usual, wore our jammies 'til late morn and had no sense of a worldly schedule for the better part of the day. Ahh, the second day of Christmas is quite different from the first but just as wonderful in its own way.
5:30 am December 25th was the time of our awakening. Bleary eyed and ohh sooo tired I rolled over to our Jules beckoning us for a little attention. By 6:15 Kristen joined us and by seven the rest of the crew had arrived...(why oh why didn't we get a king size bed?) It didn't matter too much today as we weren't exactly going to be lounging in bed...up and at 'em (opening presents that is.)
There is nothing quite like the look of little faces peering out at the Christmas tree surrounded by gifts that were not there the night before. It is something I will never tire of but will sorely miss in years to come as the kids grow up. Jamie was a complete joy to be around this Advent. At the perfect age of six his enthusiasm was infectious. His incredulous look when Santa arrived at our doorstep on Christmas Eve along with Mr. Lavery (who is the usual santa) will be savored forever. I am proud to say it is Jamie who suggested we sing "Happy Birthday" to Jesus and I only cringed for a second when he sang out, "and you live in"...I held my breath hoping a great moment wasn't about to be spoiled. "And you live in our hearts."
Our Jules is not aware of all the happenings of the past month. It is all beyond her. The irony of us learning to see and understand so much because of her while she is blind and comprehends so little is truly boggling. Another grand contraindiction in our life...
We are conscious of so many during this Christmas season. Joining hands and hearts with all of you as we lift them up in prayer.
Merry Christmas!
Patty
Monday, December 17, 2001 at 09:15 PM (CST)
Dear Friends,
Last week I had concerns about issues of Julia's reoccuring emesis, indicating that this could be related to shunt malfunction. As we went through the weekend we determined that any vomitting seem to coincide with her cough, negating with some certainty (along with her happy disposition)of there being a malfunction. While that did offer us some relief her continuous cough during the night and in the early hours of the morning did cause me to worry. I cannot help it anymore. Every digression from the norm with Jules causes worry. We have seen way too much to take any of this lightly.
Today's clinic visit erupted a new worry. The doc nonchalantly explains that Jules needs a chest xray because she thinks Julia's lungs sound like pnuemonia. I suppose when you are dealing with cancer day in and day out pnuemonia isn't so bad. Perspective, gotta keep perspective. I try to take the doctors cue and relax, realize this is very treatable and know that we haven't actually determined that this is pnuemonia. Chest xrays do not point to pnuemonia but just the same Julia will go on a 10 dose of the antibiotic Bioxin. Biggest side effect? Vomitting! (Just what I wanted to hear.)
Jules continues to do awesome in the stander and was in for an incredible time of 45 minutes!! Last week her PT pushed her hard to get up on her feet and attempt walking. She does not oblige quite yet but when we look at how far we've already come we know with time all things are possible.
Julia continues to define sweetness in our dictionary and somehow manages to bring out the best in each of her siblings, as well as her mom and dad. There is something uniquely special about Christmas this year and though I do not have the proper words to describe both the quiet of our hearts and the joy, we are aware.
To you and yours we wish peace!
Patty
Thursday, December 13, 2001 at 10:04 PM (CST)
Dear Friends,
The days and weeks have been so very full. Basketball has entered our lives for another season. Jay is continuing his refereeing career but has cut down his nights out with games significantly. Jamie and Elizabeth are both on a league team. And of course, there's the Huskies that one must watch to be able to carry on a decent conversation from December to March in CT. There have been rehearsals to make, craft parties to attend, concerts to practice for, cookies to make and shopping to be done. I am sure my list is far shorter than most and yet we feel the time crunch more than I'd like to admit. I have no intentions of resuming that kind of tempo permanently, we'll miss too much. We are looking forward to the days of being in bed by 10pm, having time to read a good book or shuffling around in our pj's past 8am. Christmas vacation is looking better by the minute.
Our Jules has been a trooper but I can tell she needs a little more down time too. A bad cold has gotten hold of her. She continues to do really well in her stander and has even come to enjoy her new position. She obviously has more strength in her legs than before we had the stander and is doing a little standing on her own while holding onto our legs. We know we have miles to go but it feels good to be headed in the right direction and even better to offer up some positive news.
Our plans with the doctors include getting her immunizations up to date. A successful bone marrow transplant wipes out all immunizations but in Julia's case her own marrow came back. She will have a test to see what she's missing for immunizations. We all have to have flu shots as Julia is now included in the "high risk" category. We also have our followup appointment with the neurosurgeon next week which I am anxious about. Julia has just started to do a little vomiting again but it's hard to tell if its from her bad cough or otherwise. Knowing the chances of malfunction of her shunt are high makes us very worried.
Plans are moving along for transition to the public school system and I am feeling more and more ambivalent about losing the therapist we have now who have come to know Julia, as well as our family and am comfortable with. While I am sure all the new folks will be great it will be a bit of a "shake up, wake up" call I'm sure. I sense that it might be hard for the therapist who work with Julia to have her transition. The tugs at our heartstrings with Julia never seem to go away.
Cheers for a little peace in all of our lives!
Love to all,
Patty
Saturday, December 08, 2001 at 07:51 PM (CST)
Dear Friends,
As I reflect over the past week's milestones and challenges I am aware it has been an incredible week by any measure. It is the first week of Advent and we have been waiting, watching and preparing like so many of you. For us I sense that Christmas may have already arrived.
Christmas arrived in the phone call asking us to talk with a family in Ct whose fourth child was just diagnosed with Hurler Syndrome. The call to offer support and compassion to a family who share our situation is a gift.
Christmas arrived in the knock at our door by a mother who knows the agony of losing a child. Her gift is not the beautiful book she brought but the presence of a stranger reaching out to us in understanding, love and compassion.
Christmas arrived in the reconnection of a special family from the Ronald McDonald House. The reminder that so many are not with their loved ones this Christmas is powerful and points towards all of our own blessings.
Christmas arrived with the 60 people who showed up on Thursday at church to make blankets for children at CCMC who will spend December 25th in the hospital.
Alas, our Jules reminds us of a special little babe who brings love to the world each and everyday.
Advent...it's here.
Peace,
Patty
Sunday, December 02, 2001 at 08:02 PM (CST)
Dear Friends,
Julia is officially one year post bone marrow transplant. For some it is a time of celebration and has been described by many as a new birthdate. The day for us passed without much fanfare. We counted our blessings in a way that was very different from what we anticipated a year ago but could not deny an underlying melancholy. The contraindictions of this past year have filled us with questioning minds and a sense of awe.
Julia continues to do really well. After only two screaming rounds while being in the stander she has become accustomed to it. Jay had her in it tonight for 20 minutes! That's outstanding (no pun intended!!) I can't wait to tell her therapist whom I'm sure will be suprised by such great progress.
Her followup appointment with the pediatric surgeon went fine, however talks do continue about surgery on her Morgagni Hernia. Because they are so rare there is no data stating the number of emergency situations faced by those who choose not to operate. Surgery remains on the back burner until she is stronger, healthier and Jay and I are ready for the next round. (And when might that be?...I won't speculate.)
Our Jules is becoming a little copycat when it comes to talking! While I may be exaggerating just a bit we have noticed a huge increase in her verbal attempts. She has been echoing "uh-oh, oh no, go and Kristen. Our tuned ears hear it all and we are really delighted by her desire to communicate! Now there will be six separate converastions going on at dinner instead of five...now there's something to celebrate!!
We hope you've all enjoyed the gift of warm weather these past few days. We cheated just a little and went ahead and picked out and chopped down our tree. There was something appealing about not freezing our "you know whats" when getting the tree. But, ahh, we did it in our usual traditional way, minus the hot cocoa! On to decorating!!
We have so many people on our prayer list tonight...we ask God to hold each of them close, let them be aware of His presence and give them whatever it is they need to get through today. Amen.
Peace,
Patty
Wednesday, November 28, 2001 at 09:49 PM (CST)
Dearest Friends,
We have been enjoying the glorious days of 6o degree weather! Imagine swinging on the swings and going for walks without our jackets on in November!! Jules is back to her happy little self, making us all laugh, singing with us and chowing on food like the Hungry Little Caterpillar. The transformation from just a few short weeks ago is incredible and has been received by all of us with a sense of relief and gratitude. Julia is an awesome little girl and we are one blessed family to have her be a part of us.
The sense of urgency medically speaking seems to have lessened. Her shunt is obviously working! A feeling of hopefulness has once again grabbed hold of our hearts. Today her "stander" arrived. It is just what it's name suggest and will hopefully be a step in the direction of getting Julia walking again. I was in tune with the quietness of Jamie as our physical therapist, Scott, strapped in a screaming Julia. Realizing I had completely forgotten to mention this new, obtrusive piece of equipment to the kids I quickly tried to assure Jamie that it doesn't hurt Julia and will be helpful to her. Sometimes, I wonder what all this looks and feels like through the eyes of a six, eight and eleven year old. Hopefully, it is simply making a place in their hearts called compassion grow.
We also met our new BESBE coordinator and were given some practical suggestions on ways to help Julia in terms of her blindness. This coordinator will be important since she will be the transition person from our present Birth to Three Program into the Public School System. Bi-monthly meetings will help her get on the same page as us in regard to how we are addressing all of Julia's issues as a family, as well as get a feel for who Julia is.
I am hoping, praying and believing Julia's medical emergencies are on hold for a while. Advent will be a season of joyfulness for us. For sure, we have plenty of reasons to be joyful!
Peace,
Patty
Monday, November 26, 2001 at 09:41 AM (CST)
Here we go again,
This is what I typed last night and lost 2 times.
Oh where oh where have philosophical Patty's updates gone. Well, we were busy with the Thanksgiving week festivities. It was a great week for Julia and the rest of the Marvelous Morans.
On Wednesday, Patty, Julia, and I had lunch at Nulli's. We rushed home to greet the rest of the Moran clan. The kids all had a 1/2 day of school. After a quick dinner, we attended the annnual St. Bridget Thanksgiving Mass. It is always a powerful service with people sharing the many things they are thankful for in their lives.
Now off to the race. The annual Manchester Road Race(MRR) has become a family Thanksgiving tradition. Running and tailgating with family and friends is always a good way to start the day. 12,000 runners and thousands of spectators makes for an awesome sight. The warm weather made the day even better. I usually run but this year we decided to walk as a family. Kristen, Elizabeth, Jamie and Julia started and finished their 1st MRR. Patty pushed Julia and I pushed Jamie. Once we hit the 2 mile mark(after the 1 mile hill) Jamie jumped out of the stroller and ran the last 2.547 miles with his sisters and friends Sarah and Zachery. I pushed Julia for 2nd half of the race while Patty and her exercise buddy, Debbie, took turns pushing the empty stroller. Kristen decided that next year she will run the race with Dad. The best part of the race was when we turned on Main St. and crossed the finish line together. Jamie had a huge proud smile on his face. Over the last 15 years I have run the MRR many times between 31 and 37 minutes. This year time didn't matter, although we did it together in 70 minutes. I didn't have time to look at the clock. I was too busy watching us enter the "shoot" as a team.
The week also included Kristen receiving her first middle school report card. Can we say high honors. Julia seems to finally have her appetite back. Elizabeth told me she was so excited about Christmas and Jamie I were busy making a "Reindeer Parking Only" sign for the front lawn. Patty got together with some friends and made Advent wreaths. We had a great Thanksgiving week highlighted by our "family finish" at the Manchester Road Race. I have run many times, but this year was "simply the best!" Thank you to my #1 team; Patty, Kristen, Elizabeth, Jamie and our team inspirational leader, Julia.
A big thank you goes out to all of Julia's fans.
With "Hope for Julia",
Jay
Sunday, November 25, 2001 at 09:08 PM (CST)
Dear Friends,
I just lost 2 long updates. They are now somewhere in cyberspace. Julia and the entire Marvelous Morans had a great Thanksgiving week including a "family finish" at the Manchester Road Race. I wiil try to get the full update tomorrow. Too frustrated and tired to type it a third time.
Good night,
Jay
Monday, November 19, 2001 at 09:23 PM (CST)
Dear Fiends,
My philosophical mode is making it difficult to write anything that will make much sense to anyone other than myself. You know... when you have a dozen thoughts running through your mind but concentration is so sporadic that not one thought really gets thought through. We're entitled. I have given myself permission to be spent, tired and weary. That does not mean we have given up, are depressed or desparate. It means we're being honest.
Our little Jules was vomiting this morning and that scared me. (Whoops, it might help for you to know she came home on Sunday afternoon.) A quick call into Dr. I. and we have a "walk in" appointment for Tuesday in the am. While he is not convinced of an emergency he does want to take a quick look at her. Diarrhea continues throughout the day and by late afternoon there is obvious blood in her stools. My call into clinic is received with Dr. B. requesting to see Julia immediately. This makes me suspect that something urgent is up. Time to get panicky? Quick coordination for care with the other children is made with my neighbors and Julia and I are on our way to CCMC by 3:45.
Dr. B. is concerned about dehydration and immediately has her pumped up with fluids (well, after a fifteen minute attempt to get the IV in her.) A culture is sent out to see what might else might be transpiring but in the meantime another med is added because it's also believed she might be having a reaction to her antibiotic for her ear. Confused? Me too! Definite case of overload!!
One lone doc, the nurse, Julia and I all stay at the clinic until about 6:45pm. The bottom line...watch for a fever, give the new awful tasting med (and I mean awful) and hope for the best. I'm putting my rose colored glasses back on right now. Hope for the best, hope for the best...yes, hope for the best!!
Peace,
Philosophical Patty
Saturday, November 17, 2001 at 08:17 PM (CST)
Dear Friends,
I think we are feeling a little more relaxed today than we have all week. Pre traumatic stress invaded our lives before surgery as we wheeled and dealed all of Julia's health issues and discussed with doctors what our expectations were for surgery as opposed to what they proposed surgery be (docs doing the surgery really wanted the Morgagni operated on, Jay and I did not fearing the consequences on the quality of her life.) Scheduling became complicated because one doctor was leaving for vacation for two weeks and surgery was to either be "now" or on hold requiring weekly spinals. Making matters even more complex was Julia's deep cough and an ear infection which almost always ceases any plans for general anesthesia. But she managed to go through surgery without a hitch.
The shunt is actually a thin tube which is inserted into the brain where the cerebrospinal fluid is produced. The perionatal tube is threaded down into the stomach where excess fluid will drain off. There is a little computer like mechanism that can be calibrated with a special unit which controls the amount of fluid to be drawn off and can be adjusted as needed. The entire shunt is under the surface of her skin and cannot be seen. In fact, the only reminder that she has the shunt right now is the half moon of stitches decorating the the back, right side of her head. Two complications that we will be watching for are fever which would indicate infection or shunt malfunction which would be indicated by vomiting, lethargy and discomfort. Though intitially naive about the followup care of the shunt I am now fully aware that we have welcomed a new doctor into the life of Julia and our family. We will see Dr. I on a regular basis.
Our Jules has slept almost entirely for the past 36 hours. Upon any movement she seems to be uncomfortable which we are actually attributing to her hernia and not the shunt. Morphine has kept her fairly comfortable but we would like for her to be more wakeful for tomorrow. At this point in time plans are still in place for discharge tomorrow but her slowly rising temp of 100 degrees could change all that.
We are hoping and praying that life for Jules will be easier now that we have totally addressed the issue of her vomiting (at least we think we have.) I am anxiuos to have her eat again, to gain a few pounds (her, not me) and resume her silly, playful disposition but most of all we just want her home with us, together again.
A warm thank you to all those who have pitched in these last few days: both sets of grandparents managed to put in a full day of being with three very energetic grandchildren (keeps them young I suppose,)
my dear neighbors Jackie, Debbie and Brianne for being "there" when I was not, my sister Teresa for letting her clan of four grow to seven for a whole day, for Lisa's unending ear on the minutest of details about Julia's health, for Maryanne, Katie and Kelley for entertaining my crew all morning and for all of you who managed a prayer, kind word or phone call on our behalf...You are all awesome! We love you and couldn't do it without you!!!
Gotta go...it's campout time in the Moran livingroom. See you all at 3a.m. watching those wonderful shooting stars? Be there...or be square!!
Love to all,
Patty
Thursday, November 15, 2001 at 09:27 PM (CST)
Dear Friends,
Julia will have surgery about 1 o'clock on Friday afternoon. This would be a good time to keep her in your thoughts. You've lifted her in prayer and faith before...you can do it again! Thank you!
Love and hugs,
Jay. Patty
Kristen, Elizabeth, Jamie and Julia
Tuesday, November 13, 2001 at 06:33 PM (CST)
Dear Friends,
I began doubting whether we had done the right thing by calling the doctor on Saturday and asking that he schedule a spinal for this past Monday because once the call was in and the spinal tentatively scheduled Julia wasn't vomiting anymore. Second guessing ourselves and trying to read Julia's every move (or movement) gets exhausting. Though we think we've learned to trust our own instincts about Julia doubts about those instincts persist.
It was fortunate that we immediately reacted to her vomiting this time. Her spinal showed the intercranial pressure was higher than it ever has been and in only ten days since the previous spinal. OR visits are becoming more stressful. Julia is always hungry and in turn cranky, Jay is caught between needing to be with us and needing to be at work, scheduled appointments never run on time and my own patience is wearing thin with the endless buracracy at a time when that kind of stuff doesn't seem to matter.
Today was spent trying to get a plan in place. Phone calls to secretaries are made who in turn pass the info along to the docs who in turn have their secretaries call me back...coordination between doctors becomes even more time consuming...Anyways, I still don't have a date for Julia's surgery which will include the shunt and fixing the umbilical hernia . Jay and I nixed fixing the Morgagni surgery after a 3 to 1 vote against it amongst the docs. Phew...definitely something to be grateful for!
Will keep you posted. Please keep praying!
Love and peace,
Patty
Saturday, November 10, 2001 at 09:39 AM (CST)
Good Morning Mates!!
Well no sooner did I finish writing Julia hadn't vomitted since November 3rd when she started up again. For the next two days there were isolated incidences until last night when she was up the entire night and doesn't seem to be able to hold anything down. Shoot, why the heck does this stuff always have to happen on the weekend? Getting a spinal tap scheduled to relieve the pressure that is obviously causing the vomitting will probably take three or four days. Back to a diet of Pedialyte and prayers...hopefully one or both will help Jules during the next few days.
Julia's appointment with the pediatric surgeon was stressful. Putting the shunt in while simultaneously taking care of her umbilical hernia seemed doable enough to me but then talk turned to the Morgagni Hernia. First, Dr. W. wants to actually see that there is one. Because they are so rare he is questioning the diagnosis. (Obviously, you can tell he doesn't know Jules.) Then he suggests that this be done at the same time as the other two procedures because she'll already be under general anesthesia. While I'm no doctor it doesn't take too much to figure out that cutting a five inch incision in her stomach, yanking her liver down where it belongs and sewing up the diaphagm is more than minor surgery. Already a two day stay begins to grow to a week and a possible admission into the PICU. My discomfort at mention of the PICU (as much as we love the staff there) makes the doc uncomfortable and I think he realized he's struck a chord. He recants the necessity of the hernias having to be fixed and says it certainly isn't unreasonable for us to elect not to have them done at this point in time. The Morgagni is asymptomatic right now but could cause bigger problems down the road. Hmmm, time for more conversations with both Dr. Peters and Dr. Gillan...doctors who know Jules.
We have been becoming increasingly aware of other individuals and families who face medical crisis right here at home. We ask today that a blanket of prayers be wrapped around all those who are sick.
Peace,
Patty
Wednesday, November 07, 2001 at 11:59 AM (CST)
Dear Friends,
Celebrations continue as Jamie turns six years old today. Cuisine of Jamie's choice for this evening includes hamburgers, french fries, IBC rootbeer and a giant chocolate chip cookie stuffed with icecream.
After dinner we will all settle in for the home movie showing of "Shrek." Excitement abounds, particularly for mom and dad!!
Julia has been indulging us with a few healthy, happy days...maybe it will even continue. Our appointment on Monday with the orthopedic doctor left us with one less thing to worry about. I told Dr. S. that I was hoping he would be the doctor that could give us some good news and he responded with, "I can!" Yahoo, yippee yi yo!! Good news!! Neither her kyphosis or her scoliosis has progressed. A year ago her diagnosis of scoliosis was overwhelming as I weeded through the vast amount of info available about this condition and what she might be faced with. It is funny how time and perspective have changed our view on so many of life's ailments and problems. Certainly we do not mean to belittle anyone elses problems but are constantly drawn back to living life in a way that we know what is important. We don't pretend to be authorities. We're right here alongside all of you learning as we go. How lucky we all are to have each other to help along! I guess that's what its all about.
On Thursday morning we will meet with Julia's pediatric surgeon and hear what he has to say about her umbilical hernia and Morgagni hernia (hole in her diaphragm.) I'm not sure he'll be anxious to fix either but also know the neurosurgeon isn't going to go near her without having it fixed. I guess I'll let them battle it out. We just want whatever is best for Jules. On a good note Julia has not had anymore episodes of vomiting since November 3rd which makes all of life easier to contend with. As you can imagine we would love for her happy, healthy disposition to continue!
While my little friend naps I think I will take this opportunity to go get my raspberry bushes in the ground and maybe even plant a few bulbs. There's nothing quite like flowers poking through the ground come spring. The circle of life...it's an awesome thing!
Peace,
Patty
Saturday, November 03, 2001 at 09:24 PM (CST)
Dear Fans of Julia,
After arriving at the office of the neurosurgeon we are greeted with, "They've lost her films." That really isn't something you say to a mother who has had her child for xrays, cat scans and MRI's somewhere in the vicinity of 25 to 40 times, not counting daily xrays in the ICU. Fortunately, they were found at the office of orthopedics (this makes sense because we're going there on Monday.) The mixup keeps us waiting an hour. An hour more for frustration to build...Jay changed his work schedule twice already, Jamie has to get to school, I have afternoon committments...yikes, slow down, you're where you need to be.
The doctors sincerity, as well as his clarity in answering all our questions and addressing our fears takes away the edge. Our plan is to see when and if Julia starts vomitting again indicating pressure could be high. At this point another spinal will be performed and if pressure proves to be elevated plans will be made for a shunt. Tonight we experienced her first bit of vomitting since her last spinal just five days ago (we have become experts at making a bed up in 2 minutes flat.) We will continue to monitor her bouts of emesis for a few days and will remain in contact with the neurosurgeon.
There of course had to be a twist to all of this and upon examination Dr. I. noticed her hernia and told us it had to be corrected before he could put the shunt in. While I won't go into details his reasoning made sense. Now we have reached a point of having surgery to have surgery. I can assure you it isn't a good feeling and the road we are being led down scares the heck out of us. The next few weeks will be filled with office appointments and plans for probable admission for both surgeries. Please keep Jules in your prayers.
We managed our family birthday celebration for both Jamie and Kristen tonight. A little Italian fare hit the spot and was certainly simple enough in preparation. We are reminded of how great it is to be our silly selves around family. (Okay, okay, we don't reserve our silliness just for family.) A smile and chuckle go a long way!
Love and hugs,
Patty
Thursday, November 01, 2001 at 10:39 PM (CST)
Dear Friends of Jules,
Cranky parents need to get sleep for the sake of the whole family. Updates become secondary. Thanks for your patience while we attempted to rejuvenate with a few nights of proper rest!
Halloween went on without a hitch. I was elected to take the kids door to door because I desparately needed to walk off all the candies I managed to snitch during the day. Fireman Jamie gave me specific instructions not to "chit chat" with the neighbors as we went door to door. I did my best but managed to sneak in a conversation or two that proved to be really interesting. My treat was to learn that one of our new neighbors is actually from Minnesota and worked right in Minneapolis... yes it is a small world!!
Kristen was quite the young lady sporting a look-a-like costume of an American girl while Elizabeth had designs on scaring people with her vampire costume. Our sweet Jules donned a lioness outfit specially made with love by Grandma. We have now lined up dentist appointments for the duration of November. The 107 candies Jamie counted in his bucket alone this morning was very scary for me.
Our appointment on Monday proved to be stressful. Julia's spinal tap demonstrated increased pressure intercranially. The results of this spinal have us off to a consultation with the nuerosurgeon tomorrow morning. He will guide us to the next step. A shunt could be imminent. While we actually anticipated a shunt at some point in time I'm not quite sure we expected it so soon.
Her electroretinagram also showed disturbing results. Her eyes, the nerves and retinas are actually in good condition. The reason she cannot see is brain related. In other words, the disease itself is kicking in and has moved in on the brain. We don't know what other areas will be affected and even when they will be affected. Conjecture is a waste of energy. We become aware of the need to live and enjoy the moments given to us today, now, this minute. Living in the here and now is a gift in so many ways. We only wish we didn't learn about it this way.
We have been having continual communication with Minnesota. While another bone marrow transplant is seeming more and more unlikely (for all kinds of reasons) our doctor is actively seeking out and studying the option of enzyme therapy. Nothing will happen immediately. Enzyme therapy studies are still in the clinical trial phase and not easily accessed. Many questions exist in our own minds about...everything.
Pray for everyone. I can't think of a person who doesn't need a prayer!!
Peace,
Patty
Monday, October 29, 2001 at 08:25 PM (CST)
Dear Friends,
The right words are not here tonight and so instead we will share a prayer used at our parish St Bridget as our community discerns a major decision. Once we read it we knew we wanted to share it with those who walk a road similar to us. We hope it will bring some source of comfort during times of uncertainty.
The following is adapted from a prayer of Thomas Merton:
O LORD GOD, we have no idea of where we are going. We do not see the road ahead of us. We cannot know for certain where it will end. Nor do we really know ourselves, and the fact that we think we are following your will does not mean we are actually doing so. But we believe that the desire to please you does in fact please you. And we hope we have that desire in all that we are doing. We hope that we will never do anything apart from that desire. And we know that if we do this you will lead us by the right road, though we may know nothing about it. Therefore we will trust you always though we may seem lost and in the shadow of death. We will not fear, for you are ever with us and you will never leave us to face our future alone. Amen.
Please pray for all children with Hurlers. They do not walk an easy road!
Peace and love,
Jay, Patty,
Kristen, Elizabeth, Jamie and Julia
Saturday, October 27, 2001 at 09:40 PM (CDT)
Dear friends,
Tonight we are especially grateful for an extra hour of sleep! The days have been just a bit too full leaving us hungry for a little more "down" time. Having a free Sunday afternoon is really something to look forward to!
Our Jules had a more intense week of vomitting (no where near how it used to be ) but enough to make us feel like we were at square one again. Being such super sleuths I think we've determined she might actually be reacting to milk or her food supplement, Pediasure. The less she was eating the more Pediasure I would give hoping to fulfill her nutritional requirements and the more she would vomit. Time to find a new way to supplement her diet.
On Monday Jules is scheduled for another spinal tap, an electroretinagram and a bone marrow aspiration. The spinal will help the doctors gauge if her newest med is doing the trick of keeping the fluid levels at an appropriate number. The bone marrow aspiration will give them a look at how her marrow is functioning though since her platelets have increased to the number of 115,000 I'm not sure if it's still necessary. The electroretinagram is a procedure I had questioned but it has been recommended by four doctors under the auspices of being noninvasive, painless and the fact she'll be under anesthesia for another procedure anyways. Given all that we will proceed this time. At the risk of sounding harsh let it be known that we're in this for Julia, not science. She's been through enough and putting her through extra tests because it might help someone else just seems cruel and reeks of "experiment."
In a followup visit from therapists it was unanimously decided that giving Julia a standardized test would be inappropriate. I was thrilled (and relieved) that our concerns about the testing were validated and vindicated in my feelings that she should be judged for being Julia not an IQ. I have been told by many and believe the services provided and people serving in the Manchester system are wonderful but know there will be times when we may be opposed to what is being presented. Our committment is to see to it that Julia's education is guided by our own beliefs and philosophies and we are assured that by working together that balance will be achieved.
Please keep Our Jules in your prayers along with our little friend Brianna who died last week, her family and our two little friends Alexis and Susannah.
Stay warm!
Love,
Patty
Thursday, October 25, 2001 at 02:01 PM (CDT)
Hello friends,
Yesterday we received some sad news. One of our little friends who also had Hurler's Syndrome died recently. She and her family lived in the Ronald McDonald House with us. This news always brings us down. The children and their families that we lived with for three months will always hold a special place in our hearts.
And now onto today.... After days like yesterday, we look foward and cherish our bright moments. Today we celebrate Kristen's 11th birthday. We will eat and open presents, and little Miss Jules will lead us in singing.. Tonight we will put all our worries aside and have fun. Kristen deserves it as well as the rest of us.
Happy Bithday to "special K".
With continued "Hope for Julia",
Jay
Monday, October 22, 2001 at 04:23 PM (CDT)
Dear Julia Webbies,
Exactly one year ago this morning we left for Minnesota knowing we were on the cusp of a journey far bigger than ourselves. In the brevity of this website I could not possibly try to put to words how our lives have changed. We are the same and we are different, all in the same breath. MN was our hope. We came away broken hearted... We do not know what lay ahead and we do not predict anymore. We live in the miracle of Julia everyday and with that comes a peace and renewed sense of hope.
On Saturday Jules turned two and 1/2. The date reminds us that Dr Peters does not like to do BMTs after this age and yet we know that Jules was not physically able to undergo one before this point. It is a time to completely trust in the goodness of God. With that trust we know we will be alright.
Peace,
Patty
Thursday, October 18, 2001 at 09:52 PM (CDT)
Dear Friends,
Believe it or not our conversations about Julia attending school are stepped up. Upon meeting with therapists the talk undoubtedly turns to transitioning. I am not sure exactly where we stand on this matter. It just seems to early to think about and yet here it is thrust at us to make yet another major decision. Reports are filled out, goals, progress and setbacks are recorded. Just about everything about Julia (and our family) becomes information for everyone. Okay, your right, they've pushed a button. We are very willing to be open and honest about all of this but I would at least like to know whose hands the info is being distributed to. Futhermore, I believe most info anyone could ever want or need can come right out of this little head of mine or Jay's, so my preference is for educators and therapist to talk to us directly. I am not good at the bueracratic stuff...all the rules, all the paper work, forms and questions make me crazy!!!
A request has been made by the Board of Education for another standardized test to be administered. The info on such a test would let educators know what level or age Julia is functioning at. While this info is a valuable tool for most students I am vehemently opposed at having it done for Julia. There are far too many variables in Julia's case. One such test was given in Minnesota and we felt the results were off, portraying a different picture of who Julia is. I don't want her judged by her intellectual attributes. I don't want her educators to look at her in terms of her inability. She has a brilliance that goes far beyond. It is a brilliance that cannot be measured through tests but by taking the time to know her and lover her. I question the therapist about whether anyone else has offered up such misgivings. With a partial smile I am assured that the family he just left feels exactly the same. BINGO! If it feels so wrong, maybe it is! Another challenge, but I'm sure we can handle this one.
We're looking ahead to a fun filled weekend. Tomorrow Jay's Cross Country Team will do a little bit of mentoring with the Bennett Cross Country Team. On Friday night Keeney is hosting a movie and popcorn night which the kids are thrilled about attending. On Saturday Jamie and Elizabeth head to New Hampshire with their dad and the St Joes Cross Country team for a meet, while Kristen, Julia and I go to a pumpkin carving party. Sunday...ahh, that is suppose to be a day of rest...we'll see about that.
Peace,
Patty
Tuesday, October 16, 2001 at 07:50 PM (CDT)
Dear Friends,
The other day as I was reflecting on the past year with some friends I was asked, "How do you have the energy to write about what is happening?" This is not the first time this question has been asked and it always makes me stop and think about why we do take the time to update this website. The answer is multifaceted but the first answer that popped into my head is that writing about Julia is energizing, not draining! Not only is it a way to keep others informed but it is a concrete way to record the happenings of Julia's life, as well as the dynamics of family life in the midst of challenge. The responses from people are incredibly uplifting and testament to the great care we have received from so many. It isn't life in full, nor is it intended to be...some is just for us. While in the hospital the website and computer were our greatest connection to the rest of the world. Now that life has a sense of being more typical the web still has and holds purpose. Of the couple dozen or more webs I have read of others in similar circumstances the feeling of being supported is felt through the power of your words. Thank you!
Reports on Jules endoscopy came back today. Dr. Rapucci was delighted. Other than a little irritation in the esophagus which may alert us to some type of allergy everything came back negative. He said it was more than he could have hoped for and we should just continue to monitor which foods seem to induce vomitting. Yippee!!
I am still waiting (I keep reminding myself patience is a virtue) for a "plan" to be put into place in regards to Julia's excess fluid issues. One suggestion knocked around included putting her on diamox which is a diuretic and monitoring her levels weekly by way of a spinal tap. I'm sure you can imagine how thrilled we are about that suggestion. Ultimately, the nuerosurgeon's opinion will weigh in heavily about exactly what it is we should be doing.
Julia's platelet issues have become so secondary I actually forgot to ask about them the other day after they took samples. We are on the OR schedule again for the end of the month so the opthamologist can do futher testing and examination of her eyes. I am still not convinced we should proceed with this procedure but have decided to schedule it and move forward on my research of an electroretinagram. We've also scheduled her orthopedic followup on her scoliosis/kyphosis. I'm hoping for little to no change and certainly cannot fathom anymore braces.
Life here on Strawberry remains much the same as in any other family. There are cross country meets to attend for Kristen, CCD classes, Brownies, field trips, PTA meetings, birthday parties and sleepovers. Not to mention dentist and doctor visits for each of us(boy did we slack off this past year!) We do the best we can. We have peace of mind and soul knowing that is all God asks of us.
Peace,
Patty
Sunday, October 14, 2001 at 09:32 PM (CDT)
Hello Friends!!
Laughter is wonderful medicine!! The other night Julia and I lay side by side and just giggled ourselves tired. Great big belly laughs!! We were laughing at laughing and it was delightful!! I know it probably sounds plain silly and maybe even a waste of time to some but it was one of the most nourishing moments of the week. Our Jules was smiling from ear to ear...no cries of discomfort, no vomitting, no neediness. We were doing exactly what we were suppose to be doing in that moment in time. Gosh, that is a great feeling!!!
Today in church, if you were one of the lucky ones, you could hear Julia singing. Yes, she was singing!! Tears stung the corners of my eyes as I realized how happy she is and how grateful I am for that happiness. Julia has managed to embrace our family in love in a way that was unknown to us before. The blessings in our life continue.
Peace,
Patty
Thursday, October 11, 2001 at 08:29 PM (CDT)
Dear Friends,
We are all living in times when we are assured of nothing. Day to day each of us knows and understands that in a moments time our lives can be altered dramatically. For Jay, our children and myself our moment came a year ago with the diagnosis of Hurlers. For our nation it has been a month. Diagnosis: terrorism. Nothing will ever be the same on either front.
This afternoon at 2:45 Jules went into the OR. Dr Rapucci's procedure took about eight minutes. A tiny tube with a camera on the end scopes out her stomach to see what it looks like. Aside from being a little pink which could mean irritation nothing is found. Samples of the tissue are taken and reports should be back on Monday or Tuesday. Upon sharing this information with us Dr. Rapucci tells us how "blessed" we are considering the condition he saw her in August and that he was quite suprised by her progress. Almost in unison Jay and I say "That's our Jules!"
The spinal tap confirmed that there is excess fluid. A normal pressure number would be at about 15. Julia was at thirty. While this is not excessively high (spinal menengitis number would be 40 to 50 to give you a comparison) Dr Haegstrom confirms that it certainly could be enough to cause discomfort and headaches. I know now that her crankiness and desire to be held was probably directly affected by this excessive pressure (needless to say I am happy that most of the time we "gave in" to her demands!) By removing some fluid her pressure is brought down to about 20 and tonight we are witnessing a much happier, calmer child able to play by herself.
I believe that Jay and I have been given a certain autonomy in assessing Julia's needs and deciding when she needs medical attention and when it's okay to just carry on our lives. Even so, we need the continual "touchstone" of medical knowledge to affirm decisions and make sure we are on track. It is an odd feeling to not be at the hospital regularly and there is an adjustment between our two worlds. Today is a day to barage the doctor with new questions and to get his insight into Julia's issues. Is this electroretinagram really necessary? How often do we need to come to clinic if she continues to seem well? What about the inevitable shunt? How do we keep tabs on her pressure levels? When do we get her off steroids? What are the side affects of the newest drug you want to put her on? Can you call in a refill prescription today? Patiently the questions are answered until we are satisfied and have our fill of knowledge to make it until the next appointment. Our questions seem to bring on new questions and the plan is never in stone. It is a process, seemingly neverending but nonetheless a process in which we believe we are fulfilling our roles and being the best parents we can be for Our Jules.
On the lighter side of life we have flung ourselves into the divinity of autumn!! A giant list of autumn activities (orchestrated by the kids) hangs on our closet door and we do our best to meet all the ideas! If you're bored come visit us and we'll have an idea or hundred to share with you!
Again, thank you to Lisa for entertaining us as we "clock watched" in the OR waiting room. We heard the hospital wants to offer her a job! Also to my mom and dad for picking up the babysitting piece and to all the rest ofyou who managed to squeeze in a special thought or prayer for Julia today!!
Love and peace,
Patty
Tuesday, October 09, 2001 at 08:46 PM (CDT)
Hi friends,
Round three is scheduled for Thursday. That's right, we will try to get the spinal tap and endoscopy finally done. We are hoping for a running nose and fever free day!
That's it for now. Pray for Julia. Pray for world peace.
With "Hope for Julia",
Jay
Thursday, October 04, 2001 at 07:39 PM (CDT)
Dear Friends,
99.4. Yup. Just a little high. But enough.
We arrive in time to consult with the three doctors involved before any procedure is to be done. A fourth, key player is the anesthesiologist. He gets to make the final call and Julia's 99.4 temperature causes him to hem and haw about what course of action to take. A fourth doctor (ENT) is called upon to check Jules out. Does she still have an ear infection? Is the fever caused by the tail end of her cold? Meanwhile, the decision to cancel out is made. No risks will be taken. Any calmness I had going into today subsides as we become wrapped around "the decision." About seven people are talking to us at once and eyes are bulging just a bit as we try to focus in on at least one conversation. It is a little overwhelming, a little ludicrous and definitely par for the course.
Let's see...the opthamologist announces that he would actually like to do a more involved procedure called an electroretinagram. This procedure will elaborate on why Julia is unable to see but
ultimately there will still be no treatment. Grey area. Should we put her through one more procedure for our own satisfaction of knowing if it changes nothing? Hmmm...might the doctors be looking for more? The worst case scenario of a tumor is negated.
Our GI doctor wants to reschedule the endoscopy even though Julia's episodes of emesis have subsided greatly and are limited to isolated instances. Dr Gillan volunteers to do the spinal tap downstairs in the clinic. A little numbing to the lumbar region and no anesthesia would leave Jules a little more than uncomfortable but the procedure would be done and over with. Still we would have to rescedule for the endoscopy and I cannot see putting her through a spinal if we can wait a week and do both together. Jay ultimately agrees. The ENT arrives and confirms there is no ear infection.
Lots has happened in the past few weeks in regards to Julia's therapy. We revisited and revised our goals for Julia with her four therapist. We are cutting back therapy to a more realistic three times a week and are presently making arrangements to have Board of Education Special Services for the Blind (BESSBE) come visit and evaluate. We are also in the beginning stages of signing Julia up for Board of Education services. Once Julia turns three (not until April) the Birth to Three people stop seeing her at which time we transition.
It is difficut to even begin to think about school for Jules but necessary so that proper personnel can be in place for her in case we do decide to go this route.
And now that I've given you every detail of the past two days and certainly far more than you wanted I will sign off only to return if there is something to actually update you aside from the changing colors of the leaves!!
Have a wonderful Columbus Day Weekend!
A great big thanks to Lysol Lisa!
Hugs from Jules.
Peace,
Patty
Tuesday, October 02, 2001 at 09:32 AM (CDT)
Dear friends,
Please continue to keep Julia in your hearts and prayers this week. Jules will be having a spinal tap and an endoscopy on Thursday. As always, we are hoping these two precedures will give us some answers or direction for her future.
For now we continue to live our lifes one day at a time and as normal as possible. Julia loves to be held and giggles with her sisters, brother, mom and dad. She is eating and drinking more. She is getting out and about with Patty during the week and is attending church again with us on Sundays. Her smiles brighten our days and yet she continues to fight this war called Hurler's. Julia's daily battles are surrounded by fatih, hope and love. These are three ingredients that our world needs more than ever.
Peace,
Jay
Friday, September 28, 2001 at 08:28 PM (CDT)
Dear Friends of Jules,
Our visit to the opthamologist left us with more questions than answers. Julia's blindness appears to be related to atrophy of the eye muscles and nerves though no one understands exactly why this happened. It is not unusual for Hurler children to have glaucoma and commonplace for corneal clouding but these can be treated. The doctor confirmed that he believes her blindness will not be reversible thus there is no treatment. It is what I expected to hear but cruelly forced me to confront one more definitive loss without any illusions. We had hoped for more. The doctor and I discuss contacting BESSB (pronounced bezzbee and short for "Board of Education Special Services for the Blind.") I do not know if they can offer some insight to our situation or not but know we must at least make contact with them. We want to give Jules a fighting chance. I want to learn the system. I want to be able to help someone else someday.
Jules has been having major temper tantrums when I won't hold her during the day. Perhaps this is a good healthy sign of the "terrible (and terrific) twos" but I am left constantly second guessing myself if there might be something else bothering her. Her three o'clock in the morning wake up calls have been brutal leaving Jay and I both a little more than just cranky during the day. I'm certain that this will just be a short little phase soon to be replaced by some other thorn, at least we hope so.
Julia seems to love Grandma's cooking. Tonight at dinner at my Mom's house she chowed down on chicken, corn, mashed potatoes and broccoli. When the kids told me she was eating the bone I didn't understand that she really was eating the bone...yikes, this is a hungry girl I've got here!! It amazes me that she is back to full fare after all her eating issues just a few weeks ago. YOU GO GIRL!
Upcoming this week Jules has a rescheduled spinal tap and endoscopy (the opthamologist wants "in" too) but she will have to get rid of her cold before they'll take her into the OR under anesthesia. We're also weaning her off of a few meds like her phenobarbitol and prednisolone. Our newest goal in therapy is to get her standing and maybe even walking with time and patience. We don't pretend that these will be easy tasks but we need to set goals, not doing so will hinder helping Jules be the best she can be. We continue contact with our doctor Charlie Peters out in MN to update him on her progress and setbacks. As the calendar approaches the one year mark since Julia has been treated in MN and Julia closes in on two and half years of age the chances of a second bone marrow transplant are growing slimmer. Though we have not been in denial about Julia's future it will be excruciating to let go of that last bit of hope...so we won't. Live in hope...believe in miracles.
God Bless America!!
Peace,
Patty
Wednesday, September 26, 2001 at 08:59 PM (CDT)
Dear Friends of Jules,
Life since our ER visit last Friday has resumed a normal tempo. Julia's antibiotics seem to be taking care of her ear infection but a deep cough persists. A quick call into clinic on Monday confirmed her blood cultures were negative but her white counts were a bit high. A request is made for us to come into clinic to have her checked "just to make sure nothing else is brewing." It appears that nothing major is on the horizon. Tomorrow we're off to the opthamologist for a followup visit. Hoping to hear some good news.
Our Jules has become somewhat demanding over the past week. Her happiness is directly affected by whether I am holding her or not. It can be difficult to find the balance. While on the one hand I would love to just sit and snuggle her the truth of the matter is I must do other things. Her big sisters and brother rally around her when Mom does not. We also spend lots of time taking walks. Jamie gets to ride his big wheel, Jule's doesn't cry and I get a bit of much needed exercise. Whatever works must be at this time in our life!
Kristen, Elizabeth and Jamie continue to bring sunshine to all of our days. Today as we made dinner together Jamie asked me if he "could sit really gently on an egg to make it hatch a chickadee." There's nothing quite as endearing as the mind of a five year old!!
Peace to all!
Patty
Saturday, September 22, 2001 at 08:17 PM (CDT)
Dear Friends,
Our dinner plans to celebrate a special occasion on Friday night are cut short with the announcement that Julia is vomitting and has a fever at home with Grandma. The desire to continue to enjoy each other's company, as well as the ambiance is trumped by the desire to be home as fast as we can to tend to Jules. Conversation comes to a halt, our dinners are inhaled and we are callously reminded that life is not normal.
Once home appropriate phone calls are made and I move around the house swiftly packing for what I believe may be an overnight or two. For us the combination of fever and vomitting can mean blood infection which in turn can lead to sepsis. This is not a road we want to revisit. The doctor is not anxious to cut our evening short but knows as well as we do that it must be. We all know the drill.
The plan is to give Jules a dose of Cephtriaxone, a big leaugue antibiotic with 24 hour power. Upon arrival at CCMC I notice her ear is draining. Looks like we may have found the source of fever...a nice messy ear infection. This is actually good news because it points away from a blood infection. Just the same her blood is cultured but not before a struggle at getting an IV into her. Our Jules is a bit like a pin cushion these days and thus access has been trying. Being a veteran has at least one advantage...they're not afraid to send us back home, knowing we know what to watch for. After getting Grandma back home (she was on hospital duty with me) Jules and I are snug in bed by 2am. Not too bad for an ER trip.
I'm pleased to say that Jules has really perked up today and was delighted to spend a little time with our friends from Maine: Rich, Marcia, Ben and Abbey and our old UCONN friends Marge and Bill. Special visits with special friends, they mean a lot these days. Thanks!
We continue to be ever mindful of all Americans during this time of anxiousness and not knowing. We pray for peace.
Love and peace,
Patty
Thursday, September 20, 2001 at 07:33 PM (CDT)
Dear Friends,
My last entry proved to be incorrect. Julia's scheduled visit to CCMC OR for a spinal tap and endoscopy were cancelled due to her cold. Immediate relief gives way to frustration once I find out it will take three more weeks to reschedule. God only knows what will happen between now and then.
Our days are filled with normalcy. Truly! I am not trying to put one over on anyone. We've had the unique pleasure of making no runs to the hospital this week. Phone calls are made to friends, trips are made to the library and the grocery store, laundry and vacuuming are completed, homework is tended to, baths are given, dinners are made. The simple has become the sacred.
Reaffirmation of the Sacrament of the Sick by Father Joe for Our Jules is as healing to Jay and myself as for Jules. Touching base with and knowing we are a part of something far bigger than ourselves makes the journey more bearable. We continue to be thankful for our community of faith at Saint Bridget and their support of us in so many ways. Thankyou!
Peace to Our World!
Love,
Patty
Tuesday, September 18, 2001 at 07:11 PM (CDT)
Dear Julia Fans,
Occasionally I get the "I don't feel like writing blues." You guessed correctly if you think this is one of those nights. So I will keep it quick and to the point (at least that is my intention as I begin.) Aside from a nasty little cold that has usurped Jules energy and her enthusiasm she continues to make strides. Her latest endeavor includes scooting around in something that resembles a crawl. Her siblings were so delighted they ran around yelling, "It's a miracle." My own excitement became limp as I realized that Julia is not seeing and thus crawling will not be the only challenge, she will also have to master her surroundings in a way none of us have ever had to even contemplate. I do not doubt that she will manage this but as a parent I would just like for something to come easily to her. There is too much struggle and never a straight and easy path for Julia.
On Thursday she will undergo a spinal tap and an endoscopy in the OR at CCMC. While information concerning a clogged aquaduct was already disproved there is still reason to believe that there could be excess pressure. Her vomiting is prime suspect of this. The endoscopy will show the doctors if there is anything abnormal going on her gut that might point to her vomiting issues and needs to be tended to.
That's it for now. The fall schedule though much lighter is still proving to be tiresome. I hear my bed calling! Have a good night!
With peace,
Patty
Saturday, September 15, 2001 at 07:37 PM (CDT)
Dear Friends,
It has been a week of extraordinary circumstances. Our hearts have been turned inside out as we witness the devastation to the World Trade Centers and the Pentagon over and over again via TV that won't let us forget. The reality of the astronomical number of people whose lives have been lost and those touched personally by these lives has been overwhelming. Through shared experience of these events with others I know that the sense of loss and grief encompasses all Americans. The sound of thunder overhead will not be heard in the same way, travel by air will be preceded with a shadow of doubt and our sense of "freedom" will be forever changed. But we are a people of strength, character and determination. The evil of this event has been served by the goodness of humankind. People of all races and religions are uniting to stand up for what is right and just. The sorrow of September 11, 2001 will resonate for some time but we shall overcome. (Sorry, didn't mean to sound so didactic!)
Though the events of this past week are of a different nature and magnitude from what we have been experiencing in our own personal life we could not help but draw parallels. We see and understand the sense of loss, the grief stricken faces and eyes filled with sorrow. We also know intimately the feeling of hopefulness, the compassion of fellow human beings and deep sense of gratitude for this compassion. Tuesday though a day of dark for our nation there shone at least one little light. Julia turned this incredible corner. For the first time in weeks she didn't throwup, she was genuinely happy, her entire demeanor was unlike the previous six weeks. She rolled over, got into a crawling position and has been talking up a storm in Julia language. Julia has had a tremendous week. We do not know if this will continue...we can only hope. It is our job to accept and be grateful for the good days and do the best we can with the bad. We know too well how fast things can change. There are new procedures on the horizon which we will update at another time.
We remain prayerful for all the victims, their families, fellow Americans, rescue workers, health workers and those misled to perform this evil deed. Amen.
Love and peace,
Patty
Wednesday, September 12, 2001 at 08:06 PM (CDT)
Dear Friends,
We continue to hold hands and hearts during this time of national tragedy. Our prayers are lifted for the victims, their families, the rescue workers, our government leaders, medical workers, all our fellow Americans and for those who were misled to doing this horrendous deed. Most of all we pray for peace. God Bless America! Amen.
Monday, September 10, 2001 at 08:41 PM (CDT)
Hello friends,
After a stressful week we were excited to be home this weekend with Julia. Well the stress returned when Julia's vomitting started again Saturday and continued through the weekend. Off to the clinic today to try and resolve the vomitting problem. Julia received some saline and glucose as Patty and the doctor try to figure out Julia's latest hurdle. A spinal tap is being set up to see if pressure is causing the vomitting. The GI doctor is on alert if it isn't being caused by pressure. We will wait and see how the rest of Julia's week plays out. For now it looks like Patty and Jules will get a well deserved day off tomorrow.
We were able to squeeze in some activities in this past weekend. The kids enjoyed some late summer pool time, bike rides, roller blading and a lemonade sale. We also went to a lobster festival in East Hartford to benefit the "Make a Wish" foundation. We managed to have lunch before Julia's vomitting sent us home. Later when Julia was feeling better we returned for our lobster dinner. It was a nice outing.
Now for the lighter side of our weekend. While Julia, Patty and I were napping Saturday afternoon we could hear the other kids screaming at each other and yelling for Dad to come quickly. I thought something serious had happened, so I ran quickly up the stairs. They had been cleaning the fish bowl and dropped "Cardinal" the gold fish down the kitchen sink. As I approched the sink I slipped on the puddle of water on the floor and landed on my butt. I looked behind me and Patty was laughing. So being the big father, I reached into the drain and saved a soggy piece of bread. What a hero! With the kids still in hysterics, I dove into the drain again and was able to find Cardinal's tail. I pulled him out and threw him back into his bowl. Cardinal was safely retuned to his environment. Within seconds he was swimming around the bowl. This Moran "fish tale" will live on for many years.
Have great week,
Jay
Friday, September 07, 2001 at 07:28 PM (CDT)
Dear Friends,
Our last entry, just two days ago, seems so very far from this present moment. Our life this past year (1 year exactly) has been filled with a history of what feels more like fiction story written by an author with an overactive imagination and appeal for drama. We have at times walked outside the story out of the sheer need to be separate and refuse to be characters in a story filled with so much sadness. It is a story of love and heartbreak as much as it is a story of hope and miracles.
We were discharged yesterday morning on a promise to get her filled with fluids and to call if things weren't right. I arrived home at noon after running a brief errand. Jamie, who spent the morning with Jay at work arrives home with him at the exact same time. The phone rings. It is Charlie Peters our doctor from MN. He has finally received Julia's MRI, one month from the date it was taken. I can tell he is deeply disturbed by the lapse in time it took to receive the MRI and proceeds to tell me Julia has excess fluid in her brain and needs a shunt put in NOW, that there is no time to lose. The error could be a fatal one.
We are no longer typical parents. There is no crying rage, no feeling of disbelief... the year has been like a dose of novacaine. We will do whatever it is we need to to get things in order. Phone calls are made, appointments made. Doctors call us, we call them. By seven o'clock all plans are in place for a very busy Friday. Our doctors here do not believe this is an emergency situation yet work incredibly hard to nullify our concerns, as well as Dr. Peters'.
Our day is to begin with an appt with Dr Iantosca a well respected (and written about) nuerosurgeon. The appt is broken because according to his office we were suppose to be admitted on Thursday evening.
I guess somebody forgot to tell us. (That Communnication word gets us in trouble wherever we go.) Finally we are admitted.
An appointment with the opthamologist suggests there isn't a lot of fluid buildup but definitely vision issues. An MRI proves that the aquaduct leading from the brain to the spinal cord is not clogged. By 6:30 Charlie Peter calls us once again to say Jules is okay for now and that a shunt is not necessary immediately. A relieved Mom and Dad who are far more stressed than they can understand right now are happy to take their sweet Jules home.
One year ago today I wondered where we would be on September 7th, 2001. Home.
We are home with our sweet Jules and that's a great feeling today!
A huge thankyou to all the people who helped us pull together today...whether you babysat, or called, or listened, whether you talked to us during the lonlier more questionable hours, or got us an appt for an MRI or opthamologist, whether you were the nurse, the doctor, the priest, the social worker or friend know we were grateful for your presence in our lives today!
Peace,
Patty
Wednesday, September 05, 2001 at 07:44 PM (CDT)
Dear Friends of Jules,
Our quick visit into CCMC so the docs could have a look at Jules turned into an all day affair. We meandered from clinic to clinic hoping to get whatever it was we were looking for done and over with. At Hematology all we wanted was paperwork for a blood workup, at the lab all we wanted was for her blood to be taken quickly, at orthopedics all we wanted was her new day braces to be ready and fitted and in radiology all we wanted was her NJ to be replaced as fast as possible. We got all of that and maybe even a little more (like tired, impatient and frustrated.) I head home pleased the day is over or so I thought. While I ran upstairs to get dinner going Jules had plans of her own. ("Now that mom is gone I'm going to get that darn NJ tube out.") And she did. Elizabeth immediately asks me, "Why is Julia so happy now that the tube is out.?"
Now the GI doctor doesn't know Jules too well and I suspect this will be problematic in his decision making of what to do. It is. After a lengthy conversation he ultimately decides she needs to be admitted because "we are running out of options." We manage dinner and once Jay gets home he is off to CCMC for a little overnight. Jules is hooked up to a peripheral IV for fluid and no tube is reinserted because quite frankly there is no one there to do it. In many ways this is a blessing. Guess what? The tube is gone and Our Jules is drinking orally and not vomiting...the kid is trying to tell us something. Is anyone listening?
(I do not mean to seem sarcastic but am becoming a crazed mother thinking that the tube is the problem not the answer.)
Anyways, she's at the hospital for another night so they can "observe" her eating/vomiting issues. Surgery for the G-tube remains on the back burner until they can determine if she is actually capable of eating orally without vomiting. If she proves herself we might actually avoid it altogether.
Though being in the hospital for a couple of days this week certainly was not on our agenda it has been wonderful to spend the day with a happy, calm Jules. To be with a Jules who is able to sleep restfully, smile easily and not continually retch. Yes, it was a very good day.
Peace,
Patty
Monday, September 03, 2001 at 09:48 PM (CDT)
Hello Friends,
We can tell by the climb in the number of visitors that you've been checking in on Our Jules. Thankyou! We decided to take the Labor Day weekend seriously and thus have not pushed ourselves too hard to do much of anything, including updating this website. It is good to have some down time but it is not anything we are used to. The usual bustle of fall has thus far been replaced with family time. We are adjusting to our new way of structuring our time. Meetings are gone, cleaning and organizing are in. Running in six different directions is something of the past. Spending time together, watching family movies and just plain hanging out have been etched in on our daily schedules. Jules has made us rethink life and what is most important.
There are no changes to report about Jules. Status quo. Continued bouts of emesis and lo and behold another phone call into the doctors this weekend. (I'm afraid we might be developing quite the reputation at CCMC.) Everything becomes a symptom of something bigger (at least in our own minds) and so nothing is left unsaid. I thought we might squeak in another day off from clinic but that just isn't going to happen. We will feel better if our friends at CCMC take a look at her and reassure us that she is okay.
I believe there will be a few plans put into place this week for surgery for the G-tube unless everyone can pray up another miracle. Let's see what you can do...
Peace,
Patty
Friday, August 31, 2001 at 08:52 PM (CDT)
Dear Friends,
"Intense" is the word that best describes our week with Jules. There were, of course, bright spots along the way; platelets that have been consistently rising week to week, spontaneous giggles, and even some copycat language, not to mention Jamie's proud smile at being a kindergartener, Elizabeth bubbling over her new teacher and Kristen's very mature and smoothe transition to middle school. Yes, there have been some great things happening here at 149 Strawberry Lane. But...(I'm sure you knew that was coming) we continue to have some real concerns about our Jules.
On Monday, after a brief visit at the hematology/oncology clinic we had a visit with Julia's GI doctor. While I knew we were headed in the direction of Julia having surgery for a G-tube it was disconcerting to hear the doctor say, "the time had come." We thought we could hold out just a little longer and get past this bump but as the week progressed Jules stomach issues worsened. She's been vomiting all week and tonight had to go back to CCMC for an x-ray to make sure her NJ tube was placed correctly. It is. Yet the vomiting persists. Jay and I know the time has come to concede once again. She needs a G-tube.
Our third doctor appointment on Monday was with Nuerology. If you recall, we had suspected some problems with Julia's eyesight. The nonconclusive conclusion (I'm getting good at this medical stuff) is that there has been some nerve damage and/or she can see more than we think but is unable to process the information. Her sudden lack of vision would certainly explain her irritability, her desire to lay down and the fear I sense she has when I pick her up or move her. Three more tests have been recommended, as well as a visit with an opthamologist (who will probably conclude the nonconclusive.)
The intensity of our week grew as we learned of the death of two more MN friends.
Miss Atusa bounced around the Ronald McDonald House always quick with a grin. Her battle with cancer ended last week. Our other little friend was a Hurler baby and after a 2nd transplant fell victim to a pulmonary hemorrhage. Her mom gave me so much hope in the initial phase of our clinic visits in MN. She was always upbeat and seeing the hope that a transplant gave us all. Please remember these families in your prayers tonight.
The great news...It's Friday! Enjoy your weekends! Happy Labor Day!
Peace,
Patty
Wednesday, August 29, 2001 at 07:44 PM (CDT)
Happy school days to all,
Although the weather reminds us that it is still summer, the start of school tells us summer vacation is over. Yes, I have to say, the kids vacation wasn't very long this year. However, after complaining about the shorter summer, they woke up this morning ready for a new school year.
Kristen was up early and eager to get off to her new school. She was a little a nervous yet very confident to move on to middle school. She didn't want everyone to walk her to the bus stop. She settled for just her dad taking her. After seeing no other parents at the bus stop, I realized this would be the first and probably the last time I would be able to see Kristen off on her bus. Kristen had a great day. She has grown up so much.
Elizabeth started third grade today. She too was nervous and even told me she had butterflies in her belly. She said she was fine once she saw all her friends. She had a good day but was happy to get home to see her mom and Jules.
Jamie entered kindergarten this afternoon. He was great. He was so proud to be going to Keeney St. School. Jamie used to cry every time we dropped him off at preschool. Most of the time the tears were so fake! Today there were no tears and he started kindergarten so confident. We kissed him goodbye and he told us we couldn't leave until he gave Julia a kiss goodbye. He loves his little sister.
And then there is our little Jules. She has had a long year. Last year she was blonde and almost ready to walk when the school year started. Today she tagged along in her stroller with her brown hair and an NJ tube hanging out her nose. At a time when most 2 year olds are speaking many words, running around every where, and are being "potty" trained, Julia is trying to learn how to eat and drink without vommiting. We are hoping to teach her to crawl and walk for the fourth time in her life. Her learning never ends and her schooling doesn't come with any vacations. Yet her accomplishments(and her beautful smile) are better then any grade or diploma.
Thanks for checking in,
Jay
Monday, August 27, 2001 at 07:45 PM (CDT)
Dear Friends,
Throughout the past months we have received some truly moving letters about how Julia's life has inspired people in their own life. Most of these beautiful tributes to Jules get tucked away, available for moments when we may just want to reread them or use them as a touchstone for all that is wonderful about Julia. One such letter arrived the other day and with permission from the author we are sharing it with you. It just doesn't seem fair to keep it all to ourselves...
Dear Coach Moran,
I feel the need to call you now after seeing your coaching endeavors with Caroline Pennington of Channel 30 News. I had changed into my running clothes and was going for a spin around the neighborhood when I saw you were going to be on TV. As I waited for your segment to come on I slowly got out of the desire to take that spin that I had changed my clothes for. I thought about how tired I was and how I could go tomorrow or run on Saturday with one of the groups in training that I had joined through the Hartford Marathon organization to help me prepare for an attempt at a first 1/2 marathon run. If only I had the courage to equal the desire as I believed Yates said. Anyway Coach Moran was now on and I was glued to the TV set (Thank God not like the Moran kids glue themselves) hanging onto his every word. I listened to him explain to Carol Pennington about mind over matter, rewarding yourself and having a positive attitude. But it wasn't all of that that got me on the road that day. It was his Hope For Julia tee shirt. As I watched the show I thought of the strength, courage and determination of a little girl who had been through so much and has come out on top of hills greater than the ones Caroline Pennington or myself could climb in our training for this race. I thought of Kristen, Elizabeth and Jamie who have shared their love for a sister through letters and even a desire to bring her to school for show and tell. And I thought of two parents love of family, a belief and trust in God and their willingness to share this deeply personal time in their family's life with others trhough their web page. So Coach Moran, although you are one heck of a nice guy and I'm sure you have wonderful coaching ability, it was Julia who got me on the road that day. Julia who made me realize that this is not a time to be a slug. Julia who helped me realize that with God and Family all things are possible. So I ran that day Coach Moran as I ran today and will continue to run in Prayer and Hope for Julia.
Peace,
Robin Crossley
Saturday, August 25, 2001 at 08:37 PM (CDT)
Hello Webbies,
Julia's new replacement NJ tube seems to be helping her for once. She isn't continually gagging and the food she receives from the NJ tube empties into the lower intestine helping to cease episodes of vomiting. However, food taken orally seems to still come back up. About 95% of her food comes from
the tube but we're working on changing that.
Her disposition throughout the day was fairly even and happy. It is really wonderful to have her laugh spontaneously! Music has become an integral part of Jule's day. Her favorites: Garth Brooks - I've Got Friends in Low Places, The Baha Men - Who Let the Dogs Out? and Faith Hill - The Way You Love Me. Quite a repertoire for a two year old. She also sat up today without crying and seemed to have a sense of balance while waving those hands to the music. This can only mean positive things for her futher development. It has been hard trying to encourage crawling when her favorite position is flat on her back.
We have been very concerned about Julia's vision and have been consulting with Dr. Peters in MN about the possible reasons this could be an issue. Unfortunately, there are no clear answers without consultation with a nuerologist and opthamologist which will be forthcoming. Our theories may or may not be accurate and so we are anticipating more tests...The continual rampage of testing and procedures has become totally overwhelming. We like CCMC but not that much!!
Tomorrow we are guests of CCMCs at Quassy Amusement Park. Each year they sponsor a picnic for families with children who have life threatening illnesses. Hopefully, Jules will feel well enough and we will feel safe enough to bring her. I think there might be a doctor or two hanging around in which case we'll put them on a roller coaster and see how they like the ride. Just kidding...we love you docs!
Thankyou for you continuous entourage of notes, phone calls and "e"s. Your care and recognition of this challenging time in our life have been a great source of strength to us.
Peace,
Patty
Thursday, August 23, 2001 at 11:39 AM (CDT)
Dear Friends,
While I have a few minutes I thought I'd catch you up on the Moran Clan happenings.When I last wrote our little friend Julia had just had the NJ tube put in but wasn't happy about it. Well, it looks like Julia had the last word...again. While mom thought she was sleeping soundly she found a way to get the darn tube out!! The nutritionist are becoming more concerned about her nourishment but give me the leeway to attempt once again to fulfill her requirements without the tube. I've managed to get a whopping 16 0z of Pediasure a day into her (minus vomiting.) She needs twice that amount in order to meet minimal requirements. We are on the schedule for Radiology on Friday afternoon to have them put another NJ in, though I am seriously questioning the value of having the tube in again when it appears to make her gag and vomit much more.
Other issues have surfaced and we are trying to have them addressed. We are putting on full court pressure for our doctors here to be talking more to the doctors in Minnesota. I'm afraid time lapses in certain needed treatments may work against us. Everyone is doing the best they can but the desire to have a specialist here doesn't go away.
Jules seems content enough. Smiles seem to come to her lips more easily these days and that is good sign. But she also has periods where she just cries and we are unable help calm her. It is a helpless feeling to not know what it is she needs, wants or is feeling. We do our best.
Kristen, Elizabeth and Jamie have been having a fine time with the neighborhood children. Their latest endeavor has been rehearsing for a play. With other neighbor children they have designed a set, created costumes, delivered invitations to neighbors and planned refreshments. I am delighted by their desire and follow through. Yesterday I got the first sense that maybe it was time for them to back in school. While I took what I thought was a much deserved break, propping my feet up I could here the laughter/crying of my three eldest downstairs in the family room. What could possibly bring both laughter and tears? My lovely children got into super glue!! Jamie was stuck to the rug!! Elizabeth was stuck to the tube of glue and Kristen was petrified of what it was doing to her hands!! I stifled my own laughter (and thought, "as long as it isn't me they're stuck to we're okay.") I think perhaps we will hear this story many times over in the years to come and it will remind us of how we stick together!! (Sorry, couldn't resist.)
Peace,
Patty
Monday, August 20, 2001 at 08:18 PM (CDT)
Dear Friends of Julia,
Though we avoided a visit to CCMC this weekend there was no way around the fact that we needed to touch base with the docs person to person today. Julia did indeed begin to take in more nourishment through the form of Pediasure but I had to admit that It wasn't enough. Even I could see that she was losing weight. Her protruding belly indicative of all Hurler children had shrunk down and those steroid cheeks have faded away despite the fact she's still on steroids. Zofran was helpful but it was not enough. Doctor Gillan was aware that we were not vey excited by the "button" and suggested one more alternative.
After a thorough blood workup Julia and I headed down to radiology. The plan is to put in another NG tube but this time it will be threaded into the upper part of the lower intestine and is actually called a NJ tube. It is also weighted so that it will be more difficult for Julia to vomit up. A screaming Julia requires a bit of Verced first. This drug settles her out and has the effect of amnesia. (A part of me fantasizes about the possibility of Jay and I receiving some...there is so much we would like to forget.) They bundle her up in one of those x-ray resistant gowns, numb her nose and go to work. I am tired and have no desire for pleasantries with the nurse and/or doctors. Even singing to Julia seems like a useless idea. Again, I wonder what her little mind must think of all that has been done to her. After what seems like "too long" the tube is placed and taped to the outside of her face. A grandmotherly nurse who we have seen many a time scoops up Julia and rocks her and then insists that I have some juice because she thinks I need it. I feel guilty for not having been more pleasant but know she knows what the past year has been like and expect she understands.
A spent Mom and Julia get home after a five hour clinic day. Jules is not pleased with the NJ tube and is demonstrating gagging and vomiting. My heart sinks as I realize this probably isn't going to work. We put the music on and both our spirits seem to brighten. Julia just loves music and waves her hands to the beat. A smile and even a little giggle are elicited. My day is complete.
Check out the new links (thanks to our number one Hurler advocate Lisa Post!!)
Love and peace,
Patty
PS - Julia has the best Dad, the best big sisters and the best brother in the whole world!
Friday, August 17, 2001 at 09:44 PM (CDT)
Dear Julia groupies,
Our little friend has us worrying again. After a few good days of eating and drinking, her caloric consumption is beginning to slow down. We have forewarned the doctors that a return visit to CCMC might be sooner then Monday. Let's hope she eats and drinks more so we can avoid a weekend visit to the ER.
The summer has flown by so quickly. I decided to take a few days off from work to try to give our family a sense of "vacation". The past few days have included a trip to the beach, recreation in our backyard and a visit to friends for dinner. Today Patty and I decided that Jules needed to stay at home and rest. So I headed off to Madison to the beach with Kristen, Elizabeth, and Jamie. We caught up with the Soltys clan. The kids had a great day with their cousins. I forgot how much fun it was to just stand in the water and let the waves knock you over. The kids had a blast. Simple things, simple pleasures, that is what is all about. Vacations don't have to be long and expensive to be enjoyable. Believe me the joy on the kids faces today was proof to me.
Thank you for your continued kind words. And to those of you who have trouble finding the right words to say, we thank you too. Your support both spoken and unspoken is very well appreciated. Keep praying for Jules. It is cool to be a Julia groupie!
Good night,
Jay
Tuesday, August 14, 2001 at 10:15 PM (CDT)
Dear Friends,
The past 48 hours have been promising! A visit to the clinic on Monday proved to be fruitful! I was quite fearful that the ultimate decision on Julia's vomiting would be to surgically put in the "G" tube (a tube directly into the stomach used for both food and medicine.) Instead, I came home with a new medicine called Zofran which inhibits the part of the brain that controls vomiting. I wasn't convinced that it would be beneficial for Julia but was willing to try just about anything to avoid the "G" tube. So far...IT'S WORKING!!!
It was an extraordinary day doing what normal people do; cleaning, laundry, feeding kids a decent breakfast and lunch instead of having them fend for themselves, baking cookies (even if they weren't from scratch) and feeling like I've accomplished something good for the entire family. I have, in all honesty, been patting myself on the back all day. Jay came home early and we all headed down to the shore for some school shopping. After shopping we hit on the famous "Lenny and Joe's Fishtale" for what turned out to be a most comical dinner. But let's face it, dinner with any four kids would be comical. The fact that we were there and enjoying ourselves is no slight point. It is just ordinary stuff but in oh so many ways extraordinary.
Jules is perfectly a part of our family, in every way. We do not have issues with her being so darn "special" but are sensitive to the fact that some just don't get it. I haven't quite figured out what to do with the looks that last ever so slightly longer than they should. I understand in that brief second when eyes rest upon Julia that there is a question in the mind of the surveyor. I almost want to stop and teach them about Julia, about all that she has endured, about faith and about love. The next time you see a special needs person give thanks for the treasure that person is to the world!
I've added a couple of links of other Hurler children and their trials...please check them out!
Peace,
Patty
Sunday, August 12, 2001 at 08:15 PM (CDT)
Dear Webbies,
Our plan of being away for two days from the hospital didn't quite pan out. I am beginning to feel like a broken record telling you the same thing each day...vomiting...not eating...not drinking...the NG tube came out and alas a trip back to CCMC. Yes, that's how Saturday went. After a lengthy conversation with the doctor we both conceded that the safest route for Jules was a trip into the emergency room. Jay took the detour to CCMC while I stayed with the kids at the hotel. What were we thinking??? These days when we aren't thinking so clearly we will depend on all of you to say, "Get a grip, going away(or whatever stupid idea we might have in mind) is not an option." Jules' electrolytes proved to be in a safe range again but they gave her some IV fluids, knowing it would be a good thirtysix hours until our clinic appointment on Monday.
I'm pleased to say that Julia perked up a bit after her 5 hour jaunt to the emergency room. She's taken in about 20oz of fluid, had a wee bit of applesauce and only vomited three or four times today. Should we actually let ourselves contemplate a vomit free day? Now that we're back home we've reverted to plan B. Tonight Jay sleeps with Jules...tomorrow night I do. Seeing as she's up everynight several times we decided it's crazy for us both to be exhausted and cranky. One of us needs to be functioning. Tomorrow I will hold the fort down and be the reasonable, sane adult at 149 Strawberry (or at least give it my best shot.)
Oh yes, our weekend away...somehow that got lost. The kids were just grateful to go to a hotel, swim, eat in a restaurant and stay up late. If all of life could be as simple...
Peace,
Patty
Friday, August 10, 2001 at 09:18 PM (CDT)
Dear Friends,
No sooner did I finish writing last night that Jules had adjusted well to her nasal feeds and she started vomiting, so much so that out came the NG tube. Yikes!! While this is one procedure that seems simple enough I haven't been trained in replacing it and to be truthful I hate even watching the nurses put it in. (Nothing wrong with my gag reflex!) I expected the VNA would send someone in the morning to replace it but I was wrong. Off we went, back to CCMC...our home away from home. Thankfully, it is a quick visit. I smile driving home believing we will have a two day reprieve from the hospital.
Jay and I both agree at 4pm that a change of scenery would be good. We know Jules can't do much but figure secluded in a hotel room she'll be just fine. With a good book I'll enjoy some quiet time. The kids and Jay will get some swimming in and then Jay and I will switch roles. It may not be glamorous, it may not be the perfect weekend away but it will be our family's memories. We could use a few good memories this summer. Maybe there'll even be a Kodak moment or two.
Lots of Love,
Patty
Thursday, August 09, 2001 at 08:25 PM (CDT)
Dear Friends,
Jay's trip to the emergency room with Julia was actually reasonable. Our Jules is admitted and treated expediently. Though her electrolytes prove to be in an okay range they go ahead and transfuse her with fluid just the same. I get the doctor's directive to come to clinic on Wednesday so Julia can have a nasal feeding tube put in. In the larger scheme of things this isn't a big deal but it does make me keenly aware of how far we have been set back. It is just a little procedure but it packed a lot of punch. On Wednesday they need to check her electrolytes again and for the third time in less than three days she gets a needle to her arm. A magical cream called "Emla "numbs the work area but the bruises that are left behind leave their mark on Jay and myself.
Jules seems to be tolerating her nose feeds fairly well. Wet (and otherwise filled) diapers are reason to celebrate here at the Moran home. (We'll always find a reason to celebrate!!) Julia continues to work hard for all the therapists but will definitely need more time and energy to be up and about. Losing ground on her physical mobility has been difficult. In order to undergo another BMT we need a healthy Julia. The past few weeks have been sobering...as if we needed to be any more sober!!
Though confined to the house we've managed to sneak in a few family events. Well...swimming in the pool and eating icecream together is like an event! Finding a few minutes of refreshment on a daily basis is something I have mandated. Tonight we actually joined a CCMC support group for parents and kids that have a family member with cancer or leukemia. No, Julia does not have either of these but the parents do have similar issues dealing with a life threatening disease and these are the people we see at clinic on a regular basis. The kids joined other siblings and did a expressive art project. The parents gather together with no agenda and the meeting simply happens. I was acutely aware of the pain in that room and the need for parents to have a "place." One can only hope that somewhere along this painful journey you can make it a little better for someone else.
Thanks to all who leave a note behind. Your kind words touch our hearts.
Lovea and peace,
Patty
Tuesday, August 07, 2001 at 07:35 PM (CDT)
Dear Friends,
As I write Jules is off to the CCMC emergency room with her dad for a little hydration. Six ounces of fluid and zero amount of food isn't going to quite meet her nutritional needs. After a second episode of vomiting we put a call into the doctor who suggested if we weren't able to get a significant amount of fluids into over the next hour she'd need to make the trip into CCMC. Jay insists on making the night runs to the hospital for safety reasons. Actually, I've had enough hospital and will do time there again tomorrow so I welcome his demand.
Tomorrow a NG tube will be put in until Jules can do better on her own. This is simply the feeding tube through the nose. As much as I hate the thought of it, it beats out "the button" which is put directly into the stomach. We're hoping Julia can adjust to it a little better this time.
Did I say Julia had a day off today?
With Hope for Julia,
Patty
Monday, August 06, 2001 at 09:23 PM (CDT)
Dear Julia Groupies,
Julia's work day began at 9:45 a.m with an appointment for speech. After speech we moved on to CCMC hematology/oncology clinic where Julia's overall care is being monitored. They were as concerned by her lack of fluid intake as I was and immediately got a peripheral IV running to give her a boost. No admittance this time. I will continue to evaluate her fluid and food intake and touch base with the clinic as needed. If she continues to have a lack of appetite and refuses to drink we have a few less than desireable alternatives. Let's just hope we don't reach that point.
On the bright side of events Julia's platelets have increased once again! Since she has no central line in the lab has to prick her finger and squeeze and squeeze and squeeze until they have enough to complete the sample. If platelets continue to increase this won't need to be done very often.
Jules work day at the clinic ended at 5 o'clock. It's plain to see she's pretty wiped out. Tomorrow is her day off...no therapy, no clinic. I'm not sure she will quite know what to do with herself but we'll do our best to rejuvenate.
Peace,
Patty
Sunday, August 05, 2001 at 08:54 PM (CDT)
This is what should have been in the Hartford Courant in this morning's Northeast section in response to the article "A Place Where Time Stops." Far be it from me to not get my two cents worth in!
Dear Editor,
As the mother of a child who spent seven and a half weeks in The CCMC PICU and another eleven days this past month I read Hilary Waldman's article "A Place Where Time Stops" with great intrigue. I intimately know the feeling of watching the world through a window and holding my child's hand hours on end willing her to live. I too crawled into bed beside my baby amidst a mass of wires, tubes and machines for what all believed would be the last curtain call of mother and child. It is an experience that simply defies words.
However, the PICU staff of nurses, doctors, respiratory therapists, secretaries, staff from literally every CCMC department, as well as CEO and President Larry Gold, served uas with infinite compassion. Nurses twelve hour shifts often stretched to fourteen hours to make sure mom, dad and child were settled and comfortable. It was commonplace for staff to call in on their days off to check in on our Jules. No one was ever too busy to answer our endless questions, exchange life stories or simply cry with us. Though visiting the PICU under the intense stress of illness is a parents worst nightmare I can assure all that a more committed, compassionate and experienced team of professionals would indeed be difficult to find. Hilary missed this point. We are grateful for our child's life and our newfound friends at CCMC.----
Day by day we can manage just about anything. After tomorrow's clinic appointment I'll let you know how things are going. Say a prayer that they don't want to readmit her and that she starts eating and drinking more. Thanks!
Peace,
Patty
Saturday, August 04, 2001 at 08:17 PM (CDT)
Dear Friends,
They let us go home yesterday with me promising I would get Julia to eat. I guess being in cahoots with the nurse and resident definitely has its advantages. Jay and I have sat in on "morning rounds" without exception to listen to all the medical jargon and decisions for the day being made. We are one of few parents I have seen do this but I would highly recommend it to all. (I'm sure the docs will hate me for this.) We have developed a respect for the advice and opinions offered to us but in return we have been respected as an authority on our child and her condition. There have been several instances where our knowledge enhanced rounds or in fact changed the plan of action. When you lose so much control over your child's life it becomes imperative to have ways to be an active participant. Our voice is heard. Leave your ego at home, there's no room for it here at the Childrens' Hospital. The team atmosphere, genuine respect for opinions and true appreciation for each and evey person's role is awesome. The bottom line is about children.
Arriving home I am aware of how truly tired I have become. Jules and I lay side by side for a nap. While we haven't gone back to square one we have regressed. Our Jules isn't pulling herself up anymore, nor does she crawl. Her ability to sit is limited to a few minutes and her head tilts to one side because she doesn't have the strength to hold it up straight. We are left wondering again. Are there too many meds on board? Is she still feeling punky? Has her disease progressed? Did something nuerologically happen during the Sepsis? We wonder how much its going to take to get her where she was before. And we wonder,what will happen the next time and when will the next time be.
We will take each day as it comes and embrace it. We will find the good in each day while giving ourselves permission to be sad, angry, joyous or whatever else we might need to feel in that day. Our Jules is a gift. She makes us understand what life is really about.
Peace,
Patty
Thursday, August 02, 2001 at 06:08 PM (CDT)
Okay, Okay!! I admit it I am becoming more than a little stir crazy and my frustration mounts as I hear discharge is being stretched to Monday. Did he really just say MONDAY?? I know by the doctors refusal to even make a little eye contact with me that he did in fact say Monday. I normally say "thank you" after rounds but find the words hard to utter. Julia's 101.9 fever in the middle of the night mean at least another 48 hours and her issues of not eating and how to track platelet counts are holding us hostage (well, sometimes I feel like a hostage.) However, I have just finished plotting with our nurse Kelley and the resident to get us out of here. Shhh, the plan is a secret...
Today marked two weeks of living at CCMC. I explain to the docs that there is a fine line between the medical well being of the patient and the psychological well being of the parents. Of course they laugh but honestly I'm only half joking. We need to be home. I can't help but think she'll feel that much better and do so much more in her own environment. At the very least, I'm anticipating they will oblige a pass home.
After a few quieter and more tired days in which I didn't think Julia felt well we are now seeing Julia become her old self. Finally, she's been weaned off the fetanyl and has reached day 14 of her antibiotics (although we began a new one for the fever.)
We had her sleepover braces refitted and tomorrow we are having day braces made to encourage less tightness in the achilles and eventually walking. The myriad of Julia's condition seems to come out in bits and pieces. Sometimes its even difficult for us to keep it all straight. Someday maybe we'll have the energy for a head to toe explaination.
Jay and I want to share with you that we have resigned from our position at St. Bridget as Youth Ministers. Though certainly the right decision at this point in our lives it was difficult to let go of something that had been so lifegiving for us the past decade. We are certain that other opportunities will arise when the time is right.
Thank you all for your patience and prayers for our crazy life. We miss you all!!
Sleep tight!
Love,
Patty
Wednesday, August 01, 2001 at 08:38 PM (CDT)
Dear Friends,
As I head down interstate 84 west and watch the sun gently melt into the Hartford skyline I cannot help but be aware of the two worlds in which we live. I am driving back to CCMC after a wonderful meal at my parents shared with my sister and her family who have just arrived from Tennessee. The easiness of relationships is there despite having gone a two year interval without being together. This is family. The laughter envelopes the room, everyone talks at once, a shared meal, catching up on all the happenings...a little chaos...a lot of life.
Just 20 minutes west another world exists. I park my car in the garage and head to the elevators to the 7th floor. Here our Jules sleeps slowly recuperating. Down the hall our friends family vacation has been cut short by another unwelcome fever. Next door, I watch and try not to watch as family members gather to say their last goodbyes to some child undeserving of death. This is the world no one wants to be a part of and by some reason unbeknownst to each of us here on the oncology wing we are brought here.
Our world is one of many. Look around at the geographical hearts...the homeless, the addicted, the abused. Have you looked outside of your world lately? Where is your geographical heart?
Peace,
Patty
Tuesday, July 31, 2001 at 06:37 PM (CDT)
Hi there,
Julia and Patty had a busy afternoon, as Julia had a MRI and an EEG. They were on the run for about four hours along with our good friend Lysol. Thanks Lysol for helping out today. The Dr. was pushing for results from the MRI. No luck, it looks like we will get it tomorrow. The EEG preliminary results are better then the last one taken way back in March. Her platelet count increased from yesterday and her antibiotics are now given orally. This is getting us closer to home.
Julia is taking a late afternoon into early evening nap. She'll probably be awake all evening. Oh well, it might be a late night with Jules and ESPN. Did I mention Julia slept 12 hours for her mom last night.
What happen to July?
Gotta go, time to make popcorn for our TV night.
Later,
Jay
Monday, July 30, 2001 at 07:46 PM (CDT)
Dear Friends,
Moving to the pediatric floor is feeling a little like a tease. After going over all of Julia's issues with the resident and seeing what it is we need to do to get her home I realize discharge is not going to be on Tuesday or even Wednesday. We can only hope for Thursday but I wouldn't place any bets. "Expect the worse, hope for the best" is advice we have resisited but maybe should heed.
Let's see, our Jules needs an orthotics consult, an MRI, and an EEG. Since she now has no central line and is demonstrating loss of platelets once again that presents a huge issue for us at home. Blood samples would have to be taken at the hospital and some type of I.V. would have to be put in each time she requires a transfusion. How many kids do you know that would stand for that on a regular basis? Putting another line in means surgery and since she's been through so darn much lately nobody wants to "go there." The feeling of being caught between a rock and a hard spot just doesn't seem to go away.
On the brighter side of life the kids came back from Bow Lake overflowing with stories and kissed be the summer sun. It is delightful to be assaulted by three children obviously delighted by their experience of water tubing, fishing, boating and meeting a pig. This weekend for them was about summer fun but someday I know it will mean much more. The love so many have shared with our family will resonate within us always. Thankyou!
Peace,
Patty
Sunday, July 29, 2001 at 06:48 PM (CDT)
Happy Sunday night,
I hope you all were able to enjoy the nice weather. It looked nice through the windows. Eleven days ago Julia entered the PICU for the second time in her life. The only room available was room 303 where she spent 7 1/2 weeks a few months ago. Today we moved out of intensive care to the 7th floor. What room would she move to? We are now in room 722, the same room she was sent to when she was released from the PICU last time. Furthermore, the same nurse discharged Jules from the 3rd floor. It is so nice to be out of the PICU!
Speaking of the PICU, pick up today's Hartford Courant. In the Northeast Magazine there is an article entitled, "A Place Where Time Stops". It is about the PICU that we just left.
Thank you to all our friends at CCMC for taking care of Julia.
With "Hope for Julia",
Jay
Saturday, July 28, 2001 at 09:05 PM (CDT)
Dear Friends,
Our little love bug is doing well!! She's been off that rotten mask for most of the day and if she has a good night we'll probably move to the general peds floor tomorrow. Yippee!! One step closer to going home!
As promised our Top Ten for Greatest Things About The CCMC Hotel:
10. Lovely family suite, futon, foldout chair, telephone and a bathroom just two blocks away.
9. "Look no hands"...sensory sinks for handwashing.
8. Free ice and cups. Gee, aren't they nice?
7. Endless supply of towels and sheets and we don't do the laundry.
6. Like motel 6 they always leave the light on.
5. Someone else has to take out the garbage.
4. Front row seating on the Katherine Hepburn alert.
3. Residency is so stressful it makes our life look good.
2. We're always better dressed than staff, unless of course we're wearing scrubs too.
1. Dirty diaper? "Room service please!"
Okay, alright already!! There's still no place like home.
Peace,
Patty and Jay
Friday, July 27, 2001 at 08:59 PM (CDT)
Hello Friends,
Life here in the PICU remains unchanged. Julia is looking better each day and really overall she is better but there isn't a light in the tunnel quite yet telling us it's time to go home. "This is Julia" is the chant sung by doctors and nurses alike. There will be no stone unturned before discharge. Right now our little angel is doing her best to sleep while masked with BIPAP and restrained arms. Now that she can't move her arms so well she kicks in frustration but at least the mask stays on.
Rumor has it that this morning Julia was dancing with her Dad and even offering a smile or two for Jamie. I was not fortunate enough to witness this but did have the pleasure of snuggling up in bed with Julia and falling asleep with her. We also read a book or two, sang songs and cuddled in the chair together. This has proved to be the best medicine yet for Mom and Dad.
Kristen, Jamie and Elizabeth are headed for an overnight at Bow Lake with the Lavery's. Some sunshine, swimming and summertime fun is just what the doctor ordered! We are grateful for this opportunity for them and they were totally delighted by the invite. Thanks Johan and Bruce!!
Well, tomorrow night it looks like Jay and I will hold down the fort together here at the CCMC Hotel. Time for a little computer fun. Stay tuned for our "Top Ten" on hospital living!
Love to all,
Patty
Thursday, July 26, 2001 at 09:33 PM (CDT)
Hi,
Julia continues to be very aggitated with anything near her face, on her face and in her mouth. The BI-PAP mask has been on most of the day because she is working so hard with her breathing. She doesn't like it, but it is better then being on ventilator. It is nice to hear Jules talk. The good news is that the xray this morning looked better and blood gases have been good. She is confusing the Drs. That's our Jules. Our goal over the next 24 hours is to get Julia to relax so she is not working so hard with her breathing and to avoid going back on the ventilator. There is no hiding it, we are tired and stressed. We are human.
I have the pleasure of having an overnight guest. My little buddy Jamie is staying the night. We get some quality time together and he gets to spend some special one-on-one time with Jules. He is an awesome big brother. One of the nurses commented on how much he loves his sister. Kristen and Elizabeth get to spend some well deserved time with Patty. I hope they enjoy their night away from the boys.
With continued "Hope for Julia",
Jay
Wednesday, July 25, 2001 at 09:33 PM (CDT)
Dear Friends,
There's nothing quite like a little babe sleeping peacefully. Tonight as I begin to try to clear away the stress of the day I am finding relief in Julia being content and asleep. I'm too tired to go into all the medical details and wonder if it's even necessary or helpful. As you are probably already aware Julia was headed towards coming off the ventilator and while there is excitement in that prospect there is also anxiety when we're talking about Julia (even the docs feel it.)
Well, our little friend decided she has had just about enough and while Jay took a moment to merely look across the street (the world is watching for Katherine Hepburn) Julia decided extubate herself. Of course, as you can imagine this created a lot of emergency activity about the room and an "all eyes watching" approach for several hours. Blood pressure, heart rate and respiratory all raced at numbers much higher than what is generally considered favorable. Our little friend was continually shaking and was not a happy camper. A variety of medicinal offerings did not bring her peace. Sometime today (who knows when because I have lost total track of time) they decided she needed BI-PAP (Bilevel positive airway pressure) which is basically a stepdown from the ventilator and secured to her by way of a very uncomfortable and obnoxious mask. Which of course made our Jules even more agitated and angry.
As the day wore on and she didn't settle and neither did any of her stats it was decided to take the darn mask off her. Hooray!! She continued to have issues but was at least comfortable having them. Doctors and nurses continued to play the guessing game until at long last we found the sedative of Julia's choice. As much as I love being the official hand holder, smoocher and soother alongside her Dad, it's exhausting when there's nothing you do that seems to help, particularly when it's for a 10 hour period. Alas, that is all behind us now and hopefully tomorrow she will awaken happy, refreshed and calm.
Jay and I are becoming more and more aware of strains and stresses illness is putting on our family. This morning Elizabeth was sobbing because she was sure when she went back to school the teachers would as them to write about where they went on vacation and she would have nothing to write about.
How is a parent suppose to address that? We can promise our children nothing in terms of a vacation. Elizabeth also informed me that they spend much more time with other people than they do with Mommy, Daddy and Jules. I hugged her, I was patient with her, I let her know how much I love her but am left wondering if it's enough. There's no real substitute for your own mom and dad. As much as we have tried to protect Julia's sickness from infiltrating every aspect of our lives and live normally we are becoming more and more aware of subtle changes (or maybe not so subtle) of family dynamics, as well as friendships. I think I'll sleep on it. Goodnight!
Peace,
Patty
Tuesday, July 24, 2001 at 08:50 PM (CDT)
Good evening Julia fans,
Tonight I begin by saying, "you go girl!" Julia made some huge strides today to get off the ventilator. First, her lungs looked a little bettter on the xray this morning. Second, she has released alot of fluid. Third, ventilator setting changes in the right direction occurred all day. If she has a good night, I'm hoping the discussion in tomorrow morning's rounds will be about removing the breathing tube. I'm cautiously optimistic. After all this is the ICU and changes can happen quickly. We will hope and pray for continued improvements.
Last Saturday, Patty ended her update by saying there is no place like home and asked if anyone had a pair of ruby red glass slippers. Today I went home to get the mail and found a shoe box that had been mailed to Julia Moran and family. I picked up Kristen, Elizabeth, and Jamie and went back to the hospital. When we got in Julia's room I opened the box as everyone waited anxiously to see what was in it. I pulled out a piece of paper and it said, "Dear Morans, I hope these help! Peace" In the box was a pair of ruby red slippers. OK let the emotions begin. A big thank you to the anonymous person who sent this very meaningful gift. Last night I talked about the different roads we have taken this past year. Today a pair of ruby red slippers remind us of the constant theme along these roads, LOVE. Thank you Jules.
Peace,
Jay
Monday, July 23, 2001 at 10:09 PM (CDT)
Welcome to the "Jay Perspective",
Our little Jules is heading in the right direction. Today there wasn't much change, except for some more weaning of the ventilator. Tonight is a different story. Julia has been very active. She seems aggitated, which in turn has caused her blood pressure to go up. She is more awake and is trying to reach for her breathing tube. She is even trying to cry. This is very difficult to watch. She wants the tube out. So do I! I am realizing that my patience is much thinner this time in the ICU. Been here, done that, and don't want to continue to do it now or again. I was just saying last Wednesday that CCMC is nice place to visit, but I don't want to live there. Jules is working hard to get us out of here. Thank you Julia.
Last Thursday, about an hour before Julia was put back on the ventilator, she kept saying, "Daddy" through an oxygen mask. I miss her little voice and smile. It always makes me melt! I am hoping to melt again soon. Until then I will try to be patient. At this time I'm reminded of some of the lyrics from the song "Different Roads". Julia and I dance to this tune often. The words are:
And now I walk a different road.
I'll say a prayer before I even go.
I've run ahead and gone too slow.
I've got to be still now and
Wait upon His will now.
This time,it's going to be His time.
This time!
Tonight we pray for many things. We pray for patience. We say a prayer of thanks because Grampa Moran's heart is OK. He spent the last few days in the hospital. We also thank God for moving Julia in the right direction and for being a great navigator down this different road!
With continued "Hope for Julia",
Jay
P.S. Julia, Mom and Dad love and miss Kristen, Elizabeth, and Jamie.
Sunday, July 22, 2001 at 09:30 PM (CDT)
Dear Friends,
Our Jules seems better today. A few issues worked themselves out and presently I'm feeling more confident that we are actually headed in the right direction. Sometimes when you deal with chronic illness the big issues and little issues get all swirled together until you have lost perspective and you're not sure what your dealing with. However, there are signs here that at least seem to be pointing to home, even if it will be a trek to get there. The good signs include; no more dopamine, platelets aren't being chewed up as fast, no fever, fresh frozen plasma only as needed, turning the vent down, better coloring and stats that have been stable throughout the evening. I feel like we've turned the corner...please let us have turned the corner.
Jay and I are moving into our "every other night" mode of being at the hospital and taking breaks within each day. We're trying hard to avoid those PICU Blues and keeping our chins up. It's been a tough year, period. A standing "O" to all of you who have helped in any way shape or form. Couldn't have done it without you! Thankyou!
Love,
Patty
I think it's about time we hear the "Jay Perspective," don't you?
Saturday, July 21, 2001 at 08:13 PM (CDT)
Dear Friends,
We were feeling quite optimistic this morning when rounds for Julia lasted a record breaking 10 minutes. A few minor adjustments were made to her daily regime but the doctor reminded the residents to move slow because "this is Julia." Her reputation is clear here in the PICU. Plans were definitively made to have her Hickman removed. Often the source of infection is the central line and once it is removed and the source is gone there is a dramatic improvement in the patient for obvious reasons.
No sooner did we all anticipate smoothe sailing when Jules reminded us that she is in charge. Her saturation levels began to drop down into the 80's, clearly cause for concern. Her blood pressure which seemed fairly stable began to dip as well. Her skin began to be noticeably mottled and her extremities lost their warmth. After "chasing" her for an hour or so she seemed to settle. Yikes, refer back to our number one rule in the PICU...minute by minute.
Her Hickman was removed and just nine hours after being cultured there is an indication that it was colonized with bacteria. We found the source of infection! A new Hickman (broviac, central line) will not be put in until the present infection is totally gone, which could be a few weeks.
Talk continues to be hopeful about getting Julia off the vent. Though we are already witnessing some ventilator issues, like crackling lungs and some collapse. It continues to be a balnacing act. As hard as I try, I cannot convince a doctor to guarantee me that she will be off in a day or so. Though all agree that each day she's seems better it is reiterated that she's pretty sick.
The kids had a two day hiatus planned with their Grandma and Grandpa Moran which ended today. Tonight they will lay their tired little bodies down at their other Grandparents house. While it is a treat for them to get some grandparent time it is easy to hear in their voices that they want their Mom and Dad and Jules back home. There's no place like home...I think we are more than qualified to know that. Does anyone have a pair of ruby red, glass slippers?
With Hope,
Patty
Friday, July 20, 2001 at 07:18 PM (CDT)
Dear Friends,
Upon awaking this morning the darkness of the bedroom caught me by suprise. It took but a millisecond to remember where we were,hold back wretching, take a deep breath and swing my feet onto the floor. Another day in the PICU at CCMC.
I am sure at this point you are a bit confused. Don't worry, we are too. Yesterday morning Julia and I headed to clinic actually anticipating another overnight or two on the seventh floor. You see, Julia had spent the night vomiting and by morning she had a fever of 102. Anytime a post BMT child has a fever it is protocol to be admitted for a 24 to 48 hour period. Once at clinic they immediately began giving her fluids and antibiotics. It was clear that Jules had acquired another bacterial infection in her blood. A blood culture would help us to know what specific infection she had but not immediately. Throughout the afternoon our nurse was very attentive and I knew when the doctor was in and out regularly that things weren't so great. With the combination of a very low blood pressure and heart rate well over 200 the doctor gently told me he may have to make a call to the PICU. Even at this point I ceased to be alarmed, knowing she'd be there for a mere 24 hours and then out. As the next hour past Julia's skin became mottled, her legs stiff, her lips even more blue and her responsiveness had lessened. The doctor's and nurse's sense of urgency told me what I did not want to know.
Once in the PICU exchanged looks between the respiratory therapist and the doctor let me know she was going back on the vent. The emotional weight of this move was debilitating to me and later to Jay when he received the news. Anyone who has followed even a little of this web knows our trials and tribulations with the ventilator are brutal. Julia has Sepsis Shock. The bacteria causing all the infection is known as psuedamonis, an aggressive and dangerous bacteria. However, everyone is pleased with the progress Julia has made in just one day. While we have been warned we are not "out of the woods" I think all of us feel a bit more relaxed and have even remembered to exhale. We truly are not anticipating a long stay. This room already has a memory, it doesn't need anymore.
Well, time to go...gotta give the visitor update. Will touch base tomorrow. Say a prayer for Our Jules.
With "Hope for Julia"
Patty
Wednesday, July 18, 2001 at 09:42 PM (CDT)
Hi Friends,
Well, this is round two. Julia managed to get me kicked offline and somehow I lost my entry somewhere in the deep, dark hole of cyberspace. So here we go again...only this time Jules is in bed!!
Today we had a "team" meeting of the minds to assess Julia's therapy needs. It was determined that the Birth to Three Program would increase her to four times a week and pending on our insurance we can seek services as an outpatient at CCMC. Monday Speech, Wednesday - PT, Thursday - OT and Friday - Special Education Educator. The ideal part of going through Birth to Three is that they come to us eliminating a ton of running around on our part. Since we have some difficult goals for Jules to reach the therapy will be more intense. The therapists have promised me that they do have hearts and even a little compassion but it'll be hard on Julia...and me. When you have a child that has already gone through so much it is extremely difficult to sit back and watch the frustration and tears, particularly when she has no understanding of why I'm letting them do this to her. I don't exactly look forward to these sessions.
We are also in the process of securing a nurse case manager. Though Jay and I have been thorough regarding Julia's care it is becoming evident that one could get totally lost in "the system." A nurse manager will help us coordinate so many of the conversations that must happen between doctors here at CCMC (and other healthcare workers) and in Minnesota. Julia has so many pieces to her history it will be helpful to have someone help us tie up loose ends, offer advice or lead us through the system. Services are only helpful if you know about them and seek them out. There is just way too much information for us to absorb in a short time frame and it can all be overwhelming.
In between meetings, phone calls and coordination of this that and the other thing we are actually having a fine summer. Jamie is just about totally independent on his two wheeler, grinning his dimpled smile from ear to ear at his latest accomplishment. Elizabeth runs, swims, shoots hoops and plays soccer continuously with friends, stopping only for a bit of nourishment insisted upon by her mom. Kristen is practicing being a preteen. I've learned more about hair design, french nail manicures and fashion from her than I could ever hope for. She also has been a tremendous help with caring for Julia. Day by day life goes on...
Peace,
Patty
Monday, July 16, 2001 at 10:07 PM (CDT)
Dear Friends of Julia,
How are you? Looking forward to hearing from you.
Love and peace,
The Curious (okay, and lazy) Morans
Friday, July 13, 2001 at 08:06 PM (CDT)
Dear Friends,
Long days have shifted our interest away from the internet to being involved in an abundance of summer activity. The days are full, leaving us all tired by sunset and begging for sleep. Jule's life has been fairly uncomplicated and so there has not been too much to share via her website.
Final plans are being put in place to double up on her physical therapy, continue with the special education educator, retain a speech therapist once weekly and possibly have a para professional work daily with her as well. Our hopes (therapists, doctors and ourselves) is to push Julia to her utmost potential before another transplant. Bueracracy, unfortunately, always slows the process of what is necessary and good to a crawl. Verbal authorizations,written authorizations and double confirmations all make me just a bit crazy. Perhaps I will learn a bit of patience for that which is out of my control...but honestly, I think not.
Julia is definitely becoming more mobile, pulling herself up far more frequently and even cruising while at the side of the couch. However, there appears to be some real weakness in her ankles, as well as a tightening of her achilles. This makes walking unusually difficult. Another trip to CCMC. This time to see our orthopedic doctor so Julia can be refitted for her braces and listen to some new recommendations on how to help Julia with her many ortho problems (knees, hips, scoliosis...)
Finally, we have been fully aware of Julia becoming more verbal. It is really wonderful when she says a new word or makes a new sound. A cow says "moooo" is such an easy task for most toddlers but no small potatoes for our Jules. Her verbal usage is growing! Yes!!! Though receptive language is very operable for some reason unbeknownst to doctors Hurler babes have difficulty speaking. Many Hurler children catch up and have speech that is completely developmentally appropriate. That is our hope (one of many) for Julia but if it isn't meant to be we can deal with that too. Life with Jules has been humbling. And full of love. Know that with the heartache there's lots of goodness.
Peace be with you,
Patty
Monday, July 09, 2001 at 01:17 PM (CDT)
Hi, we're back:
I hope everyone enjoyed a nice fall weekend. What was up with the weather this past weekend. The way people were dressed this weekend, you would have thought it was October. I don't care how cold it was this weekend, it is still July and people should be wearing shorts, not long pants, sweaters and jackets! As I am writing summer has decided to return. Oh yes summer means the annual Manchester 4th of July fireworks. We enjoyed watching them from Keeney St. School along with several thousand other people. It was the largest crowd we have ever seen there. The kids loved the show. It was nice to sit back and relax for a an hour or so.
Today Julia finally finishes her I.V. antibiotics. The 2 hour twice a day doses were pretty draining. Every day we look for something to celebrate. Tonight we celebrate the freedom from the I.V. wire and pump. Be free Julia, roam the house! Also, after 3 weeks of searching for a new bike for Kristen, Patty finally found one today. Finding a house was easier!
Happy summer,
Jay
Thursday, July 05, 2001 at 07:56 PM (CDT)
Hi Ho, Friends,
Just a quickie tonight. Julia's cultures came back negative!! The lab is still waiting to see if anything grows in the blood culture but I'm feeling confident we've saved her central line. Hooray!! We will continue giving her I.V. antibiotics until her nine days is up. It is a challenge keeping her happy and still while she receives these meds. Though tiring, I must admit it beats staying in the hospital.
Hope you're having summer fun!
Peace,
Patty
Monday, July 02, 2001 at 08:33 PM (CDT)
Dear Friends,
If you've ever read "Alexander and the Terrible, Horrible, No Good, Very Bad Day" you would have a sense of how our day started out. Let's see...Julia managed to poop through five layers of our bedding, I managed have a fender bender on the way to clinic, Jay and the kids cleaned out the car so well they forgot to put the stroller back in leaving me to lug around a 35lb baby around CCMC, Julia pooped through all her clothing again and I didn't have clothes packed in her diaper bag... all by 10:30 am. "STOP bad day, STOP!" And it did.
Julia's cultures continue to be negative. If the cultures are still negative by the end of the week we will all have a great big sigh of relief. Her central line will be saved and surgery won't be necessary! Last week after Julia's first platelet transfusion in over a month her counts jumped to a normal and very respectable 211,000. Today they are at 103,000 which is still pretty darn good for the little girl who just a little over two months ago needed transfusions twice a day.
We are still in the midst of conversations with our doctor in MN. Though he "left the door open" for another transplant our many questions left him with some of his own. The struggle to do what is right and best for Julia does not weigh on our shoulders alone. Clearly, our doctor shares and struggles in the decision with us. We are proceeding as if we will be returning to MN, knowing that new pieces of information along the way for either our doctor or us could cease the entire process. A tentative time frame given for our return is about two to four months. Our immediate focus is to get and give Julia as much therapy as we can in speech, physical therapy and occupational therapy.
I know I often end these writing with a prayer request and tonight I will do the same. I have asked myself "what is it you want these next few months for Julia and our family?" The answer is FUN. I want our family to have fun...to laugh, to smile, to feel and enjoy all the pleasures of life.
And so...please pray for fun for us...for yourselves and for those you love. Life was meant to be fun!!
Peace,
Patty
Saturday, June 30, 2001 at 07:12 PM (CDT)
Dear Webbies,
This past week was a clear reminder to us that we need to continue to live one day at a time. Somewhere in the craziness of life we forgot that lesson. Julia's admission in the hospital lasted three days with the threat of a longer stay until some details were worked out. Her second set of cultures came back positive which is indicative of an infection that isn't being treated with the present antibiotic. Last night the doctor explained that the cultures showed staph. I knew that would hinder our chances of going home. However, it was agreed that I would learn to administer her two new meds; vancomycin and ceftriaxone at home. It's a bit like playing hospital at home as these drugs are given over a lengthy time period which means a pump, but at this point in time I'm just glad to be out of the hospital. She was only three days as inpatient but believe me the days were long. Julia benefitted from total and undivided attention...any kids dream I'm sure but nontheless tiring for the entertainer.
On Monday we will head to the clinic for another blood culture. On the chance that the cultures come back positive again a plan to replace her central line will be put in place. We are hoping to save this line. Surgery just isn't a very appealing option right now but we will do whatever is necessary. A little break would be greatly appreciated.
Our few days at CCMC was a time for catching up with some of Julia's friends. The word miracle was used more than once to describe Julia's health and well being. I am happy that so many who cared for Julia in her most desparate days come to find her and get to see the upside of their work. Our little Jules will teach us far more about life than we will ever teach her. That I already know is true.
Stay cool!
Peace,
Patty
Thursday, June 28, 2001 at 01:02 PM (CDT)
Good afternoon,
The moment I mention a busy week, we top it with a busier one this week. The kids finish school and we jump into summer. The church carnival week means alot of running around so that we make sure we use up all those advanced ride tickets. Elizabeth's week is hectic with 2 soccer games and daily baketball camp. Kristen plans included an afternoon with a few of the "church ladies". She went and watched them get their ears repierced. Jamie gets to run around with mom and Julia. He also stared Monday morning at 5:30 am. He was so excited that church bazarr was starting. It was alot easier when he only rode the kiddy rides. I get to go on the rides with him now. As uusal, unexpected plans are thrown into the week. Miss Julia began vomitting and spiked a fever Tuesday evening. Julia and I went to CCMC emergency room from 10pm Tuesday evening until 2:30am Wednesday. After a few hours sleep Patty woke me up to go white water rafting with the St. Bridget youth group. Patty missed out on a good time because she had to take Julia to clinic. Well, those plans changed when the doctor called to say Julia's blood results came back positive from the night before and she needed to be admitted to the hospital for 48 hours. Tonight I will relieve Patty from the hospital so that she take the kids to the carnival with their friends; followed by a "sleep over". Julia and I will have diner date in the CCMC cafeteria and then we will kick back and watch a ball game on TV. There are some advantages to being stuck in the hospital.
Through all of this crazy running around we still are having continous contact with the doctors in MN. Keep praying for us as we prepare to make major decisons about Julia's future. We always feel the warmth from your prayer and candles. Thank you.
With "Hope for Julia",
Jay
Monday, June 25, 2001 at 09:06 PM (CDT)
Dear Friends,
Whoever quoted summer to be filled with lazy days? Our first half day of no school began with a bang. Breakfast out with the neighborhood gang, an errand or two, a bit of cleaning, swimming in the afternoon and alas what all those St Bridget youngsters yearn for and hope church could be everyday; "The Bazaar." Lazy days, NOT!
Our little Jules remains a trooper and even participant through it all. Her charming ways make her irresistible and she continues to draw people in. I'm not sure the last time Jay or I heard our names as we have become Julia's Mom and Dad. The other day while in a crowd I overheard the whisper from one to another, "There's Julia, that's Julia." And so to it...the circle of love grows just a little bit more.
Now Julia's platelet counts are increasing slowly but surely. Soon, I am hoping to try to wean her from the steroids. I think that would be very good indeed. CCMC visits have been minimal but Julia continues her various therapies and we are actually anticipating receiving some O.T. or speech.
So many of you have asked us about the outcome of our trip to Minnesota. Honestly, we just don't know yet. We have more questions and need to be thorough, as well as certain of any decisions we make. We thank you for giving us time and space to answer life's most difficult questions.
Yippee, as I write Julia pulled herself up in the crib...awesome...except she is crying and I must go!
Love to all,
Patty
Saturday, June 23, 2001 at 09:03 PM (CDT)
Hi friends,
Oh what a week. After a long four day trip to Minneapolis we returned home to another graduation. This week we celebrate Kristen. Last evening Kristen graduated fron Keeney St. School and now will be heading onto middle school. She has had a wonderful six years as a Keeney Cub. Her teacher said she has really enjoyed having Kristen as a student. She knows Kristen will do well in the future. I remember Patty and I struggling over our decision to send Kristen off to kindergarten. We knew she was going to be one of the youngest in her class, so we contemplated on holding her out for a year. Six years later she is doing great and is ready for middle school. We are so proud of our Kristen.
Now back to daily celebrations. Julia continues to crawl all over the place and is now pulling herself up. We help her walk a little each day. Yesterday she tried to steal the spotlight from Kristen by crawling up the stairs.
Holidays, birthdays, weddings, graduations, etc.. are always a good time to stop and celebrate. However, Julia has tought us that each new day gives us reason to celebrate. The roses smell great!
Party on,
Jay
Thursday, June 21, 2001 at 07:59 PM (CDT)
Dear Friends,
Last week Jay and I found this unopened letter addressed to "Miss Julia Jean Moran" dated March 25th. At the time we were anticipating getting Julia off the vent for the second time. With permission from Elizabeth we will share her letter unedited.
Dear Julia,
God is watching over you and so are the angels and everyone else is praying for you exspecelly me. Mommy, Daddy, Kristen, Jamie and myself all love you and grandma and grandpa, coisens,friends and even people you don't know are praying for you. Everyone keeps asking Mommy Daddy Kristen Jamie grandma grandpa all our aunts and uncles and all other people how you are doing. Sometimes when I see pictures of you I think of how much fun we had, before you went into the hospital, and sometimes I think that I'm just having a whole big dream, other times I just want to break into tears, but most of the time I think how cute you are and how lucky I am to have the best sister in the world. I really love you and pray that you get better! You are the BEST!
Love your big sister,
Elizabeth Margaret (Moran)
We continue to learn through the eyes of a child. Thankyou,Elizabeth.
Tuesday, June 19, 2001 at 10:04 PM (CDT)
Dear Friends,
Our trip here is 3/4 over. It has been a time to listen, to reconnect with old friends and to meet new ones. The common bond between parents with children with Hurlers or any life threatening illness is immediate. For us it is good to be with people who share the most basic of all needs: survival. We have become reimmersed in a world where what matters the most is getting a child better, helping families live in a way that is most healthful for the family and the simple gestures of loving one another. You won't hear about a soccer game, how busy life is, a Tuesday night meeting or upcoming plans for the weekend. Conversations revolve around the latest ANC, hemoglobin and platelet levels. People here at the BMT clinic live for the day in hopes of a brighter tomorrow. Thanks to the efforts of such dedicated doctors a brighter tomorrow is possible for so many.
Today we had the opportunity to meet up with an internet friend. Jodi and Alexis were just arriving in MN as we were leaving this past January and though we had several internet conversations we had never met. Today we did something about that. Our little Hurler friend Alexis is 100+ post BMT and fully engrafted but is experiencing a few complications. My heart goes out to Jodi as she tries to hold all the pieces of life together in hopes of reaching the pot of gold. A prayer for our Kansas friends would be warmly received.
We also hooked up and had dinner with another family from CT. We actually met Mel, Jackie and Rachel here in MN when they were here for consultation back in January. Our paths crossed again at CCMC and we have been in touch throughout the past several months. Seven year old Rachel and her 5 year old brother share a very rare blood disease requiring a bone marrow transplant. Rachel seems to be doing wonderful post bone marrow transplant and is truly an inspiration. The disease for Michael is in an earlier stage and so a bone marrow transplant will happen at a future time. Again, the commonality of our lives has brought us together and I am certain a lifelong friendship is in the making.
Tomorrow we meet another internet friend for a quick cup of coffee between appointments. Susannah has experienced such a similar path as Julia that we follow each others updates to see where our Hurler babes might be headed. Words don't always do justice to the experience and so a hug to the parents who intimately know what we know will be enough. We are grateful for this opportunity to meet up with them.
Finally, we continue to listen with our hearts as all the information about Julia is layed on the table. No decisions have been made and none will be until we know with certainty and utmost clarity what path we should take with our precious Jules. We trust that God will let us know when it's time.
With Hope for Julia,
Patty
Sunday, June 17, 2001 at 08:20 PM (CDT)
Salutations from the Midwest,
Our morning of travel went well with the exception that I forgot the Cheerios. Geepers, what kind of a Mom forgets the Cheerios? Julia let me know she wasn't happy. In fact, she let everyone on the plane know she wasn't happy. Some creative play made Julia laugh and let the people around us know we're nuts.
We also found out for certain that carryon luggage is over rated (unless you like pain,) that having one child on a plane is like having four, that the headphones plug into side of the chair not the t.v. itself, that the front of plane isn't a good place to sit if you need the bathroom a lot and that people do not like waiting for you to gather together your stroller, carseat and other paraphanelia(sp) if it means they have to wait. Yes, it's been quite the learning experience.
After arriving at our hotel room at about noon we were able to catch a few zzzz's. Sleep is a beautiful thing. Refreshed and rejuvenated we grabbed a quick dinner and are now settled in for the night. Tomorrow will begin bright and early with our first appointment at 8 a.m. We are hopeful that over the next few days as we gather information and listen to our own hearts that we will find the answers that will bring new direction and hope for Julia.
Peace to all,
Patty
Saturday, June 16, 2001 at 10:25 PM (CDT)
Late night, early flight. We will touch base from the Midwest tomorrow!
Love to all!
Patty
Thursday, June 14, 2001 at 01:22 PM (CDT)
Hi there,
Our little friend Julia continues to hold her own with her platelets. It's hard to believe she hasn't had a transfusion since May 21st. This Sunday Patty, Julia, and I will board a plane and head for Minneapolis. We have appointments with doctors on Mon., Tues., and Wed. We will return late Wed. evening. This is a very "bitter sweet" moment for us. In many ways its a miracle that we are even considering another transplant, yet the thought of another transplant is scary. We have been to the front line many times in the last 9 months and have learned more than we ever expected or wanted. So for now we will listen and no matter happens in the future we will continue to let our faith take on our fears.
Today is one of those days when you put all your worries aside and celebrate. Today Jamie graduated from pre-school. He really looked great in his cap and gown and he enjoyed his commencement ceremony. He was so proud of hinself and so were we. He has grown up so much in this past year and he is ready to go off to Keeney St. School.
Last week Jamie came up with a great idea for his final "show and tell". He wanted to bring in Julia. I said to him, "What would you say?" His response was plain and simple and right from the heart. "This is my sister Julia!"
"High Fives" to everyone,
Jay
Monday, June 11, 2001 at 09:45 PM (CDT)
Dear Friends,
We have a new alarmclock that goes off promptly at 4 a.m. each day. Our little friend Julia awakes in such a happy mood that its difficult to get frustrated. This morning she insisted on being nose to nose with me and wrapped her arms around my neck.
Who could resist that for an alarm clock?
Today marks week three without having had a platelet transfusion. Her bone marrow aspiration demonstrated an occasional megocariocyte which means some platelet production can happen. Whether her ability to maintain her platelet levels is related to these megocariocytes or platelet production still seems to be up for conversation. We have received the written reports from all her tests and at this point in time there seems to be no clear markers indicating new issues to be concerned about.
We thank you all for your continued prayers.
Peace,
Patty
Saturday, June 09, 2001 at 03:54 PM (CDT)
Hi everyone,
It's about time we got some summer weather. Not much to report. We are trying to get a visit to MN for June 18th and 19th for Patty ,Julia and me. I will know Monday morning when our actual visit will take place.
Enjoy the weekend and keep those candles burning.
Peace out,
Jay
Thursday, June 07, 2001 at 08:34 PM (CDT)
Dear Julia Fans,
I forgot to give you the other awesome news of our extraordinary Tuesday...Julia is crawling!! Just a tiny bit here and there but I can't tell you how happy I am to have to put the gate back up at the top of the stairs. She's mobil!! We're psyched!! The physical therapist and special education educator who she sees once a week were delighted by her progress even from a week ago!! I know all this must sound old to you but it is a piece of heaven for us.
I regret not having any new info on her many tests but am trying to understand and be patient with all the red tape. We are dealing with so many factions it is nearly impossible to keep everything straight and yet we have to be on top of every detail. Other parents echo our own thoughts.
The other day at the clinic I got hold of a giant medical book and being the busybody that I am decided to read anything I could about Julia. As I read about all the debilitating effects of Julia's disease I got a real sense I was not reading about our Jules at all. Our Julia isn't scary, her disease is. Her disease is overwhelming but Julia is not. The description of the disease would lead one to believe that life couldn't be good and though Julia has had it tough I believe her life is very good. The essence of Julia is in her sweet, funny little personality and the love that beams within and without. The essence of our Jules was not nearly captured by this clinical description of her disease. I wonder if they teach that in med school...I wonder if it's truly understood.
Peace,
Patty
Tuesday, June 05, 2001 at 09:05 PM (CDT)
Dear Friends of Julia,
I think I would have to categorize today as extraordinary. Today was bone marrow aspiration day. Jay and I chose to not have it done before this point in hopes that some way more time would mean more healing. Though her platelet levels have been dropping ever so slightly we attributed that to the steroids. Today however, we received what we believe to be awesome news. After not being transfused for fourteen days her platelets actually rose from a count of 49 to a count of 61. The doctors agree...she is beginning to produce!!!
The aspiration itself was not very pleasant. First, a needle with a numbing agent is inserted to the hip bone. Then another gadget similar (but smaller) to an apple corer is literaly grinded in through the skin and into the bone. Though Julia was on fetanyl she was awake and let out a blood curdling scream. Marrow is suctioned out within minutes and the procedure is complete. I wonder for the upteenth time if it is better to be with her for these procedures or not. Today Jay was with us. I was grateful.
A visit to the PICU and the seventh floor to say "hello" to friends and showoff Julia proved to be most worthwhile. All the staff seemed genuinely happy and incredulous at how well Julia is doing. Entering the PICU and remembering that time period makes us fully aware of how far we've come.
The past is done and it is time to move into the future. Our doctor from MN was in contact today and tentative plans are in place for our consultation. This is a step that even a month ago we were'nt sure we would ever seriously contemplate. Time heals.
Love to all,
Patty
Monday, June 04, 2001 at 08:16 PM (CDT)
Hello ,
Tomorrow will bring our first visit to the clinic in 15 days. It has been a nice break. We won't know until the morning whether or not Julia will need platelets, but we do know she will have a bone marrow aspiration. Check Patty's last update for an exlplanation for the procedure.
I played telephone tag with the doctors in MN today. I hope to make contact with them tomorrow so we schedule a consoltation visit soon.
Not much more to report. I'm tired, so I'll say, "Goodnight!"
With Hope for Julia,
Jay
Saturday, June 02, 2001 at 08:27 PM (CDT)
Dear Friends,
All the routine activity of the week and then some provided a great backdrop for our family striving, reaching and maintaining normalcy. I must say it actually works most of the time. This week the pressure is on just a bit more as I realize had we gone to MN back in April our stay would be about halfway complete. The days and weeks are slipping by and while we have truly needed this "time" I am acutely aware that the bigger picture needs to come into focus. Not because there is an immediate sense of danger but because our lives need direction. We had hoped to have a consultation slated before the end of the month but after several attempts to contact our doctor in MN we found out he is out of the office for a week. While most of the testing here in CT is just about complete we have yet to see the definitive results of anything. Frustration seems to be our common reaction to bureaucracy. It never ceases to amaze me how peoples' lives can be in a total holding pattern waiting to hear "results" while test results sit "somewhere" unattended. I guess we need to push harder.
Julia has been doing wonderful. Friends who haven't seen her on a regular basis are visibly moved at the progress she has made. We are still excited by the littlest of accomplishments which include standing while holding on, saying her siblings names, using bits and pieces of sign language, eating everthing and being very socialable. This week I managed to escape visiting CCMC for the entire week. Her platelet counts are dropping ever so slowly and we had no reason for a transfusion. On Tuesday she will undergo a bone marrow aspiration. The doctors will then take the marrow and examine it to see what exactly is going on. We would hope that there would be some megacariocytes thriving that in turn would lead to the eventual production of platelets. But I know the doctors are not expecting that at this point. We remember that each day is an opportunity for healing, for cures and for answers. We remember that each day is a gift.
Love to all,
Patty
Thursday, May 31, 2001 at 03:45 PM (CDT)
Hello June, goodbye May:
I can't believe tomorrow will be June 1st. Where did May go? I guess time flys when your busy. Although it has been a short week, it has been a busy week. Kristen and Elizabeth both had their field days this week and Jamie had his class picnic at Wickham Park. Patty and I not only attended our prayer group for the first time since last fall but we hosted it last night. As usual, it was a night of prayer and of course, a few laughs. We enjoyed having the "church ladies" and their husbands over for a visit. Elizabeth has soccer practice tonight and Kristen will be busy with a school project. Jamie and I are going to ride bikes in a few minutes. Tomorrow Patty is going with Elizabeth on her 2nd grade field trip. Patty has book club tomorrow evening and Saturday brings Confirmation and a night out with friends for pizza. As you can see, it has a been a long "short" week.
Oh yeah and about our liitle freind Julia. She has had a great week. She continues to communicate and socialize more. Her appetite is growing each and every day and she is standing for longer periods of time. The most exciting news of the week is that Julia hasn't had a platelet transfusion since last Monday. Her last visit to CCMC was on May 21st. Two weeks without a visit to the clinic, can we say POTATOS!
Enjoy your weekend.
The Warriors
Monday, May 28, 2001 at 07:25 PM (CDT)
Dear Friends,
As you can imagine I am so pleased that my wonderful husband let you know that I am another year older. I am trying so hard to do this aging thing gracefully (better call Oil of Olay) and actually went running on Friday morning to simply proclaim my youthfulness. Just for the record I still can claim "thirty something" (though I won't tell you for how long.)
We took a little adventure to Sturbridge for an overnight getaway. It's been too long since we've had the opportunity to go somewhere with a sense of abandon, (should have left the kids.) After the reality of packing five of us and gathering all of Julia's meds for a 24 hour period I hoped the investment would be worth it. At the Village we ran into an acquaintance who got the biggest kick out of the thought of 6 of us in one hotel room. Glad someone found it funny. Jay and I envisioned happy children thrilled to be away from home for a night and spilling with kindeness to one another. And yes there were glimpses of that, Kristen holding Jamie's hand while they ventured into a crowd to see wool being carded and Elizabeth playing a game of tag in the pool with her brother or the taking care to see that Julia was happy. The other moments...
well...uh, I guess we're...I hope we're just your typical, high energied family. The important part of this is that we were
able to and comfortable enough with Jules to go away. YES!!!
We made tentative plans with CCMC to have a platelet transfusion on Tuesday morning. It has been wonderful to go a full week in between platelet transfusions and have normal regime day to day, though I do worry about the longterm affects of steroids on Julia's little systems. This week we are anticipating some written reports on all the testing Julia underwent the past 2 (3?)
weeks. We are also anxious to set up consultation with our doctor in MN to get another perspective. We are hoping that soon it will be clear to us what our next step is. Please pray for clarity.
Potatoes,
Patty
Friday, May 25, 2001 at 08:16 PM (CDT)
Hi,
Our little friend Julia is becoming a chow hound. She is eating everything we give her and she is holding it down. This is a huge change from a few days ago. Tonight she enjoyed some of her mom's birthday ice cream cake. She is also standing much longer these days. I hope to see her standing in the middle of a room soon. Then we must teach her to walk for the third time in her life. I'm sure we will get there. People continue to be amazed at her progress.
Tomorrow we are going to travel for a family overnight. A big night in a hotel room with all six of us. I can't wait. There is an indoor pool and of course the kid's favorite; an ice machine. A 24 hour get-a-way is what we need.
Good night and Happy 30 something Birthday to my beautiful wife Patty.
Happy Memorial Weekend,
Jay
P.S. I'm sure Patty will let you know how our family slumber party went. Stay tune for some laughs.
Wednesday, May 23, 2001 at 07:51 PM (CDT)
Hello Webbies,
We sucessfully managed having four more tests done on Tuesday. Julia's cooperative nature while being tested (for the most part) has made the task of testing manageable. I suppose there is a part of her that thinks of all this as normal. As for me, I am becoming less resistant and want to accomodate just getting it done and over with. I remember our first day at CCMC, some nine months ago and the ill at ease feeling I had being there. My intuition told me I would become familiar with this hospital but little did I know what an integral part of my life it would become. Tuesday as I sat and waited for our appointment with the cardiologist I realized that CCMC had become a second family. Julia is a familiar face, a regular, as a matter of fact I don't know if there is a clinic there that we haven't had dealings with. Most know her history. The hospital that once seemed so big has gotten much smaller and I don't walk a hallway without running into someone I know. In a strange way that is comforting.
Julia's EKG and echo were completed in a matter of minutes which actually suprised me. The tests we had in MN in regards to her heart were much lengthier. The doctor at CCMC said the tests showed her heart to be normal. Now I'm a little dumfounded because her heart was a major concern pre bone marrow transplant in MN. A written report will be forthcoming and I hope will clarify this discrepancy.
Julia's second two test were done in the pulmonary lab. The first was a Transcutaneous Test which measures the arterial blood gases (oxygen and co2 levels.) They simply stick a probe over her lung area directly on the skin and a machine figures out whats happening over a 30 minute period. Her co2 level were on the low high side and her oxygen levels were in the normal range. The second test was a bit more disturbing as they had to stick a mask on Julia's face which had attached to it seven wires. Fortunately the test works whether the child is crying or not. Julia screamed and fought each time the mask was placed over her face. I wonder what she thinks as I sit there and let them do this to her. It's a pretty helpless feeling. The results of her flow-pressure-volume curves will be analyzed by the pulmonologist and we should have a more complete picture of pulmonary function within a week.
Julia is hanging on to those platelets!! So well that we are actually contemplating going away for a night or two sometime soon.
A little R and R would go a long way for all of us. I am also very happy to announce that Julia has not vomited in 48 hours. That's huge!!! This morning it became clear that Julia might get a new nickname like Hoover or Chow Hound. She sat and ate wild oat puffs for 45 minutes. Lunch and dinner proved more of the same. Guess the steroids are working on her appetite.
Finally, Julia got a new little walker to facilitate mobility. This should be only temporary and it will help get her one step closer to walking independently. We are working a bit more intensely with teaching her basic sign language. She understands the spoken word well but needs a little help in being able to communicate her wants and needs. To me this is really an opportunity for our whole family. As I'm writing I'm thinking how wonderful (and quiet) it would be if we became proficient. A quiet Moran house??? Wow, now that would be a miracle!!
Love to all,
Patty
Monday, May 21, 2001 at 08:38 PM (CDT)
Hello Julia fans,
It was just another "manic" Monday. Everyone was tired from a busy weekend and slept in a little later then normal. Rushing around to get out the door is always a great way to start the new week. JUlia wakes up and says "hi Daddy." The girls finally made it to school and I made it to work. Jamie went to his grandparents and Patty and Julia to the clinic for platelets. While traveling home Julia was having a reaction to her transfusion causing some panic. However, after medicine, her rash disappears. After all this Patty found out that Julia's platelet counts were high enough this morning that we could have waited until tomorrow for her transfusion. She has to go back to CCMC tomorrow to visit the cardiologist for more testing. I rush home to a great big "hi Daddy" from Julia.
This evening after an early dinner Patty was off to soccer practice for Elizabeth. Patty walked in the door at 6:48pm and she and I went to the Bennet Middle School open house and orientation. It is hard to believe Kristen will be going to middle school next year. We left Bennet at 8:45pm to head home. I was tired and Patty looked exhausted. Finally we get home to four tired children. Julia greets me again with an even bigger "hi Daddy!" Then this Monday ends the same way it started. Everyone rushing around,not to get out the door, but to get to bed.
As the day ends I just heard those two beautful words again, "Hi Daddy!"
Happy "Manic" Monday,
Jay
Saturday, May 19, 2001 at 08:36 PM (CDT)
Dear Friends,
This is my fourth attempt at writing. I am trying to no avail to find a good way to share the news of the death of three more children. There is no good way. There are no words that can accurately describe and convey the sickness I feel inside of knowing three more children were cheated out of life. I share the news with Jay knowing he understands the emotional weight of these deaths.
Two of the families we came to know well while living at the Ronald McDonald House. The third was a little two and half year old Hurler girl who came to Fairview Medical in MN after us. She had a pulmonary hemorrhage 14 days post transplant and her parents chose not to keep her on life support. We are struck by and struck down by the similarities with Julia's own recent illness. We realize and are reminded of how close we were...
Our little, seven year old friend Katie had cancer. Her mom and I became friendly partly through our similarities and partly because of the simple connection regionally (PA.) The girls became very friendly with Katie and in turn Katie was quite fond of Kristen and Elizabeth. It was a warm friendship of shared laughter, exchanged stories, games and dolls. After a brief stint home during Christmas Katie's family returned to MN for what was suppose to be her final weeks of treatment. But the news received by the family in terms of treatment when they returned was of such great daunting magnitude the family opted not to continue. I couldn't really understand that then. But time has given us insight and wisdom enough to not judge anyone faced with these decisions. Katie has died. The news though expected is no more easy to process.
Ryan and his family came to the Ronald McDonald House just a week after us. Julia and Ryan were basically on the same time line for a BMT and so our families identified with one another on many levels. Ryan, an energetic little seven year old was diagnosed with ALD, a rapid degenerative genetic disease that shows up at about age seven in boys. He came to MN in October with a limp. When we left in January he was confined to a wheelchair and couldn't chew or swallow. It was horrifying to watch it happen literally before our eyes. Late night conversations including predictions of the future, our families, life back home and God wove our families lives together. We were truly fond of the Barry family. Ryan died of post transplant lymphoma at home in Louisiana in his bedroom.
I share all this because in ways big and small it becomes a part of who we are, it helps to form us, our opinions, views, attitudes and perceptions of life and all that living encompasses. The truth for all of us is that we do not know what tomorrow will bring and for that matter do we really want to know our destiny here on earth? Just live, learn and pass it on...
Our Jules is doing okay. We are anxious for her to make some strides like standing or crawling. But after a few days of vomiting again she doesn't seem interested in physical activity. It is hard finding the balance in giving her the rest she needs and pushing her a little more to reach her full potential. I like to be the snuggler and let the professionals do the pushing. Jules likes it that way too.
Peace,
Patty
PS
If you haven't already please sign our guestbook.
Thursday, May 17, 2001 at 01:31 PM (CDT)
Dear Friends,
While Julia is napping I thought it might be a good time to catch you up on her happenings. Wednesday at 9a.m. we arrived at Hartford Hospital to register Julia and headed straight to Nuclear Medicine for our testing. However, unbeknownst to me Julia was only getting a dose of radiation material through her Hickman for contrast testing later in the morning. We headed back to CCMC for a dose of intravenous benedryl to help Julia fall asleep for her CAT Scan. Often other stronger sedatives are used before this procedure but I vetoed them due to breathing airway complications in Hurler Children. They deferred to me this time but I know in the future we may have to use sedatives under the guidance of an anethesiologist. Julia obliged us by falling asleep exactly one hour after the administration of benedryl. A series of scans including her lungs, chest and abdomen area were taken. High resolution scans were also done on her lungs. Results of this test will be forthcoming.
At 11:30 am we headed back to Hartford Hospital ( a mere walk across the green)for her GFR testing. Julia is layed on a table with her legs strapped together and a machine the length of her body closes down over her about four inches above her. I anticipated her to be a bit impatient with this (I know I would have been claustrophobic and itching to move) but Julia giggled and ever so patiently lay there still as can be. Ten minutes into the test we had to begin all over because she urinated and that would change the results of the test. One half hour to go.
The radioactive material acts as a contrast on her kidneys and helps capture the rate of the glomerular, which in turn are counted to see if they are in the normal range. I didn't have a full grasp on this test but know it will give us an idea of kidney function. We were home by 1 o'clock.
Two tests down.
Her platelets seem to be doing something funky. Yesterday, a full day after her transfusion her count was up to 137,000.
Normal is 150,000 to 3000,000. I again find myself speculating. Could this be more than just the steroids kicking in? Could she actually be hanging onto platelets? Maybe even producing her own? It is a longshot but one worth holding onto for now. If her marrow repairs itself (which usually after four months if it hasn't then it won't)then we could actually pursue more experimental (and presumably safer than a radical 2nd BMT) treatment such as enzyme and gene therapy. If nothing else we are keeping all options open right now until facts are in hand. With time the answers will come.
Thankyou for your continued prayers!!
Peace,
Patty
Tuesday, May 15, 2001 at 07:36 PM (CDT)
Dear Friends,
Tomorrow will be an intense day. At 9a.m. we will be at Hartford Hospital to begin one of many tests to see how healthy Julia's insides are. The first scheduled test is called a GFR (glomular filtration rate) and will measure her kidney function. Later in the morning she'll have CAT scan back at CCMC. Other tests on the horizon encompass pulnmonary function, an electrocardiogram, echocardiogram, MUGA test (no one seems to remember what the abbrev stands for but it's heart related,)a MRI, a bone marrow aspiration and one or two others I cannot recall at this moment. Essentially, all these tests are going to give us a better picture of Jule's health and help us to decide how to proceed. We are approaching another fork in the road and desparately want to know which way to go. We are told that whichever path we choose it will be the right one. Somehow I know that is suppose to be comforting but it doesn't make any of this any easier.
Julia is doing so well these days. Since the steroids have "kicked" in her need for transfusions has dropped dramatically. Our days are full and fairly normal aside from routine care of her Hickman, taking blood for labwork and giving her meds. Julia's little personality is in high gear and she continues to make strides in what she is physically able to do. So many prayers have already been answered. We raise so many more to You...please answer again.
In Hope for Julia,
Patty
Sunday, May 13, 2001 at 10:03 PM (CDT)
Good evening and Happy Mother's Day,
Most of us have probably read the saying, "God couldn't be every where so that's why he invented Mothers!" I guess I could change it to say Doctors, nurses, therapists, dieticians and teachers can't be every where so that is why moms were created. Moms go above and beyond the call of duty. Kristen, Elizabeth, Jamie, and especially Julia agree. Patty may not be a great barber, however she is a great mom.
Happy Mother's Day to Patty,mom,mom, all mothers, those who are becoming moms in the near future, yohan moms, and all surrogate moms.
Goodnight,
Jay
Thursday, May 10, 2001 at 03:30 PM (CDT)
Hi Ho!
We're back! A mini crisis kept us from writing on the web last night. I managed to snip Jamie's ear in the process of cutting his hair and while I initially thought it was just a little cut the blood dripping everywhere told me otherwise. Off to the ER. Three hours and two stitches later we arrived home. Writing on the web was not a priority at 12:30 a.m. All any of us could think about was sleep.
The other night I took a few moments to read over my own personal journal from the past few months and found myself so pleased
with the progress Julia has made. We were told we would need nursing eight hours a day
to help with the vast amount of care Jule's needed. While the first few weeks were hectic we're doing just fine by ourselves and have no intentions of getting a nurse. We were sent home with a nubulizer, oxygen tank, oxcimeter and feeding pump which will all be returned to the supply company because we lack a true need for any of them. Julia has gone from being a total ragdoll to being lively and demanding. We like that! Our attention turns from her daily care to a desire to understand the futuristic picture. I am learning a lot about programs/ services for children with diasabilities and at the same time becoming aware of the system. This experience has been an education on so many levels;
intellectually, emotionally and spiritually. Questions remain in our hearts.
What is life about?
I had the pleasure of attending Jamie's preschool Mother's Day Tea at Nike Tykes today. He finished the sentence "My
mom is special..." this way:
"My Mom is special because she makes me great peanut butter and fluff sandwiches. She reads to me when she can. I love her and she loves me."
The wisdom of a five year old. A little bit of peanutbutter and fluff goes a long way. Thanks Jamie!
Love and peace,
Patty
Tuesday, May 08, 2001 at 08:50 AM (CDT)
Hello web friends,
I'm sorry for the late update. I was so tired and lazy last night and decided to write early this morning. Of course I missed my 6 a.m. deadline. Oh well, here we go any way.
Last evening was awesome. Our little friend Jules was actually acting like a clown. She was making us laugh and giggle. We were all singing, laughing and Julia was leading us with rasberries. Her little personality is returning. One song we played last night called "Got to Be Time" sums up our evening. The chorus says," Got to be time for dancing, got to be time for singing, take time to celebrate the fire of the moment, got to be time for laughing, got to be time for shouting, thank the Lord for what he's done, there's got to be time."
The moment was burning last night with so much life and love. Too bad we can't freeze the fire!
Have a great day and take time to celebrate.
Jay
Saturday, May 05, 2001 at 09:29 PM (CDT)
Dear Friends,
We love to celebrate! Today Elizabeth made her First Holy Communion with about 25 other children at St Bridget. After mass our celebration continued with family and friends here on Strawberry Lane. Elizabeth looked so pretty in her little white dress and rosebuds in her hair. I am hopeful that she will always remember this special day on the continuum of her faith journey.
Congratulations Elizabeth and all you other First Communioners!!
There are other reasons to feel celebratory at least for yesterday and today. In the a.m. yesterday Jay called Julia's name from across the room and she distinctly turned her head to his direction. On the way to clinic I reached back to stroke Julia's leg in the car and she blurted out a great big giggle! Her happy mood continued throughout the morning and she seemed more conscious of what was going on around her. She reached for a book and attempted to turn pages, bopped to music with her hands, did lots of clapping, slapping her belly and looked into my eyes for a brief but nonetheless longer period than ever before. These tiny improvements are the bits of hope we hang onto.
Her clinic visit involved visiting the G.I. doctor to assess her issues with vomiting and while the vomiting has slowed way down we are now concerned about her lack of eating. Anyways, the doctor increased one of her meds and put her on a soy and milk free diet because he says she has exzema. (What doesn't she have?) He also found a tiny amount of blood in her stool which could mean gastrosomethingorother and may call for a endoscopy. One more doctor we get to know.
Her platelets seem to be hanging around a lot longer due to the steroids and I believe we will be able to plan on a few days off from clinic in a row. However, a multitude of tests will occur over the next few weeks indicating the overall health of her various systems. I'm sure it will be grueling, as usual.
So many of you ask about the other children and how they're handling everything. Be assured that they are really doing great! Tonight after the Communion Party we settled in for a family movie (Remember the Titans) and felt in total sync with one another. There was true unity, a feeling of togetherness, of one for all and all for one that was indisputable. Jamie, Elizabeth and Kristen have rallied around their sister in a way that is not smothering but totally lifegiving all the way around. We have four unique and equally wonderful children which we will always feel blessed for. Amen.
Peace,
Patty
Thursday, May 03, 2001 at 09:38 PM (CDT)
Hi everyone,
Julia is going to clinic tomorrow for the first time since Monday to get platelets. Last week she was requiring transfusions daily. The steroid she is now on is definitly helping her hold on to her platelets longer. She also hasn't vomitted since yesterday morning. I think the heat was bothering her today along with everyone else. Right now I'm enjoying watching Julia resting comfortably in her crib.
Patty has been working hard to get the house clean for Elizabeth's First Holy Communion this Saturday. With the help of her mom and friends the house is almost ready for the big occasion. It is going to be nice host a party again.
We continue to plug along every day trying to live a normal life. The days are long and we are usually exhausted when we go to bed. Yet we come to appreciate life more because of Julia, Jamie, Elizabeth, and Kristen. They certainly fill up our days. Thank God for busy days!
Goodnight, hugs from the Morans.
Jay
Tuesday, May 01, 2001 at 10:44 PM (CDT)
Dear Friends,
It is quite late and so I will truly keep this short with a promise to update more thoroughly in the future. Jules is having a tough go of things. I wish the NG tube had been the cause of her continuous vomiting but even without it she doesn't seem to keep anything down. It's been several days now and even with the addition of some stomach drugs there is no true sign of improvement. Though tomorrow promised to be a day off from the hospital because platelet levels were at 88,000 this morning I have a feeling I might be making a visit to decide the next step that needs to be taken for her continual bouts of emesis. The "G" tube keeps getting mentioned which I believe would be direct feeds in the lower portion of the intestinal tract. I was hoping for more progress this week and a sense of being on a schedule but feel like we barely have a schedule and have taken a step backwards. Tomorrow is a new day. Thank goodness for new days and for new chances.
Goodnight!
Love and peace,
Patty
Sunday, April 29, 2001 at 09:14 PM (CDT)
Hello,
The other half is back. We are starting to settle in to a routine. I guess the first clue that says we are getting back to normal is a broken down car. Seeing my car on the back of a AAA truck Friday evening is very normal. If there was a frequent flyer program for miles in a AAA truck, I would have more mileage points then most business travelers. Looks like my old Crown Vic needs a new starter. Seven months ago a car repair would have stressed me out. Today, no big deal. When I get the bill....will wait and see.
I wish I could say I was able to spend alot of time outside this past weekend enjoying the beautiful weather, but I can't. Patty and I spent most of the weekend inside tending to Julia's needs. She spent most of the Friday night vomitting. Just when I thought it was all over with, Kristen decided to join her sister at 4am. An afternoon visit to CCMC for platelets wasn't so bad. In and out in 2 hours. After a great night Saturday Julia woke up hungry and sucked down a juice box. A few minutes later juice was flying every where. Sunday she began to eat some more. As the day went on her stomach seemed to be getting better. The vomitting has slowed down. Then at about 4pm Jamie began screaming about an ear ache. After two hours of tears he finally settled. I guess this is our normal life.
To many people our weekend may not sound like fun. However, having Julia home is wonderful. I guess we really did have a beautiful weekend after all! I hope yours was too.
Gotta go. Only three more loads of vomit laundry.
Goodnight,
Jay
P.S. Patty did write last night.
Saturday, April 28, 2001 at 09:24 PM (CDT)
Dear Friends,
The past hour has been amazing. The 72 hours before that were filled fear, tears and excessive vomiting. As I have mentioned Julia was having issues with keeping any food down. I'm sure each of us can relate to this if we think about having the flu, that awful pit of your stomach feeling of wretching your guts out and praying for the next 24 hours to pass because you've never felt so horrible. Think about doing that for 72 hours. Julia did.
Tonight as she sneezed up tons of white stuff three times over I decided to check the nose tube placement. As I lay the stethoscope on her belly and inserted a syringe of water through the tube, water squirted out her nose. The tube wasn't in correctly. Jay and I decided to remove the NG tube before getting a doctors okay and found it was only inserted about three inches. While we're not doctors common sense tells us that the stomach is a little futher down than that. While we can only guess how long the tube was in incorrectly let it suffice to say that her tube was put in about two weeks ago and that's when vomiting started. (Or all this could be totally coincidental? Maybe.)
Now for the amazing part of this piece of info or maybe it isn't amazing after all. Julia's entire personality shifted after we took the tube out. She sat up tall, giggled, said, "Hi Da" and was a happy little girl. The doctor is in agreement with me that we will keep the tube out for at least the next 48 hours and see how she does with her oral feeding. I am in no hurry to have her get another NG.
Tonight I think we actually might get some sleep! Yippee! Tomorrow night I will make sure my other half (notice I didn't say better) gets to put in his two cents worth on the web.
Hugs from Jules! (And the rest of us too!)
Peace,
Patty
Thursday, April 26, 2001 at 09:43 PM (CDT)
Dear Friends,
We are in a bit of a dilemma. We have been given some new guidelines in relation to using "Caring Bridge" as a website. The new guidelines state that we cannot use the names of persons without permission or the names of patient friends without permission.
While I did recieve permission from patient friends there are some statements about others who I have used without permission. Certainly our intent was/is never to undermine or cause harm and actually I've avoided mentioning people personally but just the same the freedom to write becomes more stringent. Let me go see if Jay minds me mentioning him...
The days continue to be manageable. With some teamwork Jay and I are able to make this work. Yesterday Jay was working late so he took Julia to the clinic giving me the morning off to attend to things I might not otherwise be able to. Our days are very full balancing all that any household must manage and then learning how best to care for Julia. Being home is like a new found freedom and so the extra pieces are not a bother. We are actually grateful for this opportunity.
Julia's steroids are kicking in so her platelet counts are holding their own a little better. This morning she was at 39,000 and we still transfused her with the hopes that we will actually get a day off from the clinic. WOW!! Jamie and I have been planning all day how best to use our day together away from the hospital with Julia. If the weather holds, a morning in the park might be perfect.
Julia continues to have some issues with vomiting and today she began with a runny nose. The steroids can bring on mood changes and so we are now witnessing an extra cranky Julia. On the "up" side of things I am sure Julia looked directly into my eyes and knew who I was. That was a moving moment...this child has been through so much, she ought to be able to know she has a Mom, a Dad and a family that loves her to the moon and back again. I want that for Julia. I want her to know love.
Well, I'm all over the place tonight and not holding consecutive thoughts too well. Time for bed.
Goodnight!
Peace,
Patty
Tuesday, April 24, 2001 at 09:04 PM (CDT)
Hello Friends!!
Welcome back!! A big move home, adjustments to make and sheer exhaustion kept us away from cyberspace yesterday. Julia's first night home was uneventful for her but a major deal to us. I think I slept with one eye open the entire night and would be embarrassed to tell you the number of times I got up to check on her. Her crib is about a foot away from my own bed.
Our morning began in high gear with me drawing her blood labs and Jay bringing the blood to Manchester Memorial to get her platelet counts. Lots of organization the night before and preplanning made our first morning home together run very smoothe.
Jay headed off to work at a somewhat decent hour and after the kids were off to school I was on my way to CCMC for Julia's platelet transfusion. I thought we (the doctors, bloodbank and myself) had a plan in place to make the visit as efficient as possible but somewhere the communication broke down and it would be an hour and a half before the platelets would be ready for Julia's transfusion. We took advantage of the beautiful weather and I also got the benefit of a bit of exercise striding down Washington St. From my doorsteps to CCMC and back we were done in less than four hours, quite better than the six to ten hour clinic visits when I first arrived home and I'm certain we can trim down the four hours to much less. This will be manageable.
Julia is continuing to do a little more each day. Her barium swallow test showed she was ready to begin have foods orally. I'm anxious to get rid of the feeding tube and after seeing her suck down four ounces of juice this afternoon I think it's realistic that we can move to total oral eating over the next two and a half weeks (that's my goal and we all know mother's know best...right?) Julia is showing some signs of being stimuli sensitive and not wanting to necessarily be hugged or touched when she's upset. We believe this is probably her way of being defensive to all the poking and prodding over the last several months. It is sad to know that the most snuggable little girl I ever knew is resistant to touch. Slow, gentle and soft work best for Julia.
The present temporary plan in place to help Julia's platelet issue is to give her steroids. It's not a cure and actually suppresses her immune system but the benefit of it raising her platelet levels seems to outweigh the downside effects. All are in agreement that daily transfusions should be avoided for a multitude of reasons.
IT'S GREAT TO BE BACK HOME!!
Peace,
Patty
Sunday, April 22, 2001 at 07:14 PM (CDT)
Hello Julia fans,
What a day. The blood drive was a huge success with somewhere between 125-150 people giving blood. There were also about 25-30 first time donors. The Red Cross was very happy with this drive. A special thanks to all those who came out to give blood and to the nurses, volunteers, custodians(local 991 who donated their time), Frank Amara(Principal, Keeney St. School) and to the best blood drive chairs, Lisa Post and Carol Zoef.
It is hard to believe tonight will be our last night and our little Jules will be sleeping in her crib tomorrow evening. We know we will have plenty of hospital sleepovers in the future, but for now we look foward to some quality sleep time at home. Another special thanks this evening goes out to all the great staff here at CCMC. For last 68 days Julia has received the best care possible. Patty and I are so grateful to them for taking good care of Julia and our entire family. Thanks to the CCMC crew, Julia will be going home.
At the top of every journal entry is a slogan, "Those who give love, gather love." Julia have given us all so much love and along the way so many people have been gathered in by her love. Her love is magnetic. This simple little slogan is so true. By the way when I started dating Patty, I gave her a framed picture of a little girl with three little ducklings following her every step and above the picture were the words, "those who give love, gather love."
Goodnight from CCMC. I look foward to up dating you from Strawberry Lane.
Peace,
Jay
Saturday, April 21, 2001 at 08:58 PM (CDT)
Dear Friends,
Our little two year old friend had another wonderful day at home. It is great to just hang out. The kids were busy in the neighborhood riding bikes, playing basketball, climbing "the tree," drawing with chalk and sharing secrets with friends. Jay and I were busy entertaining Jules, doing a bit of cleaning, bandaiding a knee or two, teaching Jamie how to ride a two wheeler and occasionally intervening at all the belly aching amongst siblings in the backyard. We feel normal. This is normal for us and we're liking it a lot.
Our normal day continued with all of us attending mass together in our backrow pew for those quick and often needed exits. I was really struck by the gospel of the loveable "Doubting Thomas," who I so clearly relate to. How many times have I challenged God to prove God's self these past few months? It just seemed so fitting to hear that gospel with Julia sitting at my side knowing tonight will be my last night here at the hospital with her. Julia is proof alive.
Tomorrow is another big day for us. The Blood Drive in Julia's honor has gotten a tremendous response and Jay, the kids and I are hoping to be as much a part of it as we can. It is gratifying to know that Julia's life is helping so many!!
One final note. As life resumes to normal we probably won't be updating the web nightly, certainly the minutuae of our life
is rather boring. We will however keep you posted on Julia's clinic visits and new developments! Thankyou!!
Hugs and kisses from Sweet Jules to you!
Love,
Patty
Friday, April 20, 2001 at 07:55 PM (CDT)
Good evening,
Well the birthday girl went home for almost 7 hours today. When we returned the nurse asked about our day. Patty said," Great day, nothing real exciting." I would say it may not have been exciting, however it was one of those days you want to "freeze" or just stop time. Patty, Jamie, and I picked up a quick lunch. Then we went home and hung around the living room with Jules. Jamie had her giggling and smiling. We then went for a stroll to get the girls at the bus stop. It was a great walk. Julia enjoyed the fresh air; Patty and I took in the neighborhood for the first time in over 6 months; and Jamie rode around on his big wheel. Along the way we were approached by neighbors who were so glad to see us out with Jules. Kristen and Elizabeth were jumping when they saw their sister. They were so proud showing off Julia to their friends. We went home and the kids played in the yard with their friends. Our neighbors said it was so good to see and hear the kids back. Julia went in the house and slept for 2 hours in her crib. She hasn't slept in her crib since mid-February. It was an awesome sight. Jules ended her day at home opening presents and watching her family eat birthday cake. Home sweet home!
Reality set in when we returned to the hospital. Being back here is a constant reminder that we have a long road ahead of us. Yet along the road we must enjoy every crumb we get. Today's crumb is worth saving. Someday we hope to get to the banquet. After all a banquet is made up of many crumbs. OK, I stole this analogy from a good friend.
Happy Birthday Julia. It certainly was "a beautiful day in the neighborhood!"
Hugs and kisses from Jules,
Jay
Thursday, April 19, 2001 at 07:43 PM (CDT)
Dear Friends,
We managed just fine on our afternoon pass at home. All the business of the day was done early on while we were here so that at home we could just chill out. Tomorrow I'll probably administer any meds she needs for the day in the morning, she'll get her platelets and then we will spend a longer period of time at home. The gradual transition will give us the confidence and experience in caring for Jules ourselves. I think we're all feeling more comfortable with the present plan. By Monday all systems will be in place for the final move.
Mention of a long term planning lets us know we cannot continue on a day to day path for too long. Although it would be nice to catch our breath before we have to hear the words "bone marrow transplant" that is obviously not a part of the plan. Because Julia cannot make her own platelets she will either be transfusion dependent for the rest of her life or have to have another bone marrow transplant. (A third solution may be on its way...a new drug that helps produce platelets but has many side effects. One of our doctors will seek out info on this drug at a conference next week.) New conversations are beginning with Dr. Peters in Minnesota and Dr. Gillan here at CCMC. Both in depth discussion and praying are going to have to happen before any decisions can possibly be made.
Tomorrow April 20th marks Julia's second birthday. It will be a day to celebrate for sure! We will be the ones lighting those candles and saying a prayer of thanks!
Sleep tight!
Wednesday, April 18, 2001 at 09:33 PM (CDT)
Hello everyone,
Julia is going home Thursday. Julia is not going home Thursday. She is going home Thursday. She is not going home Thursday. After many conversations about our departure from CCMC, the consensus amongst the Drs., nurses, Patty, Julia and me is to delay our exit until probably Monday. There are too many loose ends to tie up before we go home for good. We are OK with this decision. It is best for Jules! We will get day passes every day, so Julia will be home for her big 2nd birthday.
Julia has come along way over the last several weeks. She has worked hard to get out of ICU and is now on the "runway" waiting to fly home. Now Patty and I are faced with challenge of Julia's future. Crossing the other "bridges" were difficult, however the big picture may be tougher. I guess we have to look back and see how far we have come and then continue to break down the future one day at a time. Hey I sound just like a cross country coach.
Julia is much more alert and I am excited about her progress. I enjoy watching her follow me around the room with her eyes. She giggles when I tickle her tummy. She smiles and crys. She doesn't care for the Drs. and nurses poking and touching her. She is sleeping comfortably on her belly again. These are definite signs of the real Julia.
We may not be able to predict the future, but we know tomorrow will bring a new sunrise. A sunrise wrapped in Faith, Hope, and Love.
Nighty-night,
Jay
Tuesday, April 17, 2001 at 09:47 PM (CDT)
Hey There!
Another day has gone by and we still really aren't quite sure when we will be leaving for home. The more people I talk to the more I see that there are several loose ends that need tying before I would even be comfortable heading home. Decisions need to be made on what equipment is essential and what can be dropped, medicine is continually being weaned at a fast rate, plans need to be in order about how we will handle her platelet problems, private nursing issues need to be addressed, CPR training has to happen, bouts of emesis need to cease and I need to feel comfortable with the move for this to be a successful story. Two outside nursing agencies told me today that they are certain more time is needed for a smoothe transition. We want to be home and yet know
just a bit more time may be needed to do it right. In the larger scope of things a few more days isn't going to make a difference.
Our consultations with medical staff continue at a steady pace each day. There are times when I think I cannot possibly tolerate hearing about one more piece of information. It can be relentless. It can be overwhelming. Yet I know we must listen and ask until we understand so that we can give Julia the best possible care once home.
I believe that each day Julia is doing just a little bit more than the day before. As I look back on the past few weeks I see we have come miles and miles.
The other night I had an opportunity to talk with Kristen, Elizabeth and Jamie about Julia's homecoming. They already know implicitly how much attention and care our Jules needs. I also went over emergency plans with them, reminding that staying calm was paramount,as well as calling 911 and answering all questions asked of them by the dispatcher until help arrived. Putting the plan in place proved most difficult for Jamie who told me he felt like crying because it reminded him of "that night." In little ways he has shared his sadness over Julia's sickness leaving me a little bit sadder myself. I think its time for us to make our "happy list" once again.
On the social side of life the kids are having a busy few days off. On their very first day of vacation they conned Grandma and Grandpa into getting them fish! They also went off to some neat park in Windsor, saw "Spy Kids" with me and headed to work with their Dad today for some swimming and helping out the college girls. We're all enjoying staying up later to play and lazier mornings during vacation! Jay and I actually went out to dinner alone and had more to talk about than the rolls and butter. Tomorrow is a new day with a new road to be travelled. I am certain there is more fun to be had!!
In "Hope for Julia,"
Patty
Monday, April 16, 2001 at 09:11 PM (CDT)
Whatsssssssup,
Julia is up at 10:30pm. She is wide awake and she just had a nice loud giggle. She is making more strides to get out of here. Each week brings a new doctor with a different view. His plan is to get Julia out later this week instead of at the begining of the week. This will give us more time to prepare on the "home front."
Not much more to report. Keep those candles burning, but save a few for Friday. This Friday we will light up the world and celebrate Julia's 2nd bitrhday.
Later aligator,
Jay
Sunday, April 15, 2001 at 09:48 PM (CDT)
Dear Friends,
What could be more perfect than an Easter Sunday with beautiful weather and a dinner with your husband and children? Our day was very simple but pretty perfect. The children were thrilled to have Julia home, dancing around her, holding her, blowing bubbles to induce giggles and telling her how much they love her. Jay and I soaked in the warmth of being a family together under one roof, once again, if only for a few hours.
The Easter Bunny visited the Moran home leaving footprints and even a note but imagine how suprised we were to find the Easter Bunny also left goodies on our doorstep and an egg hunt on our front lawn.The thoughtfulness, generosity and creativity in letting us know your "with us" has been eye opening. We are continually thankful.
Returning to the hospital with Jules was difficult. Saying goodnight and goodbye to Jay tonight I felt the familiar pangs of wanting life to be different and of coming face to face with our realities. The message of new life on this beautiful Easter Day is what gives us hope, inspiration and courage to seek the goodness of our lives today and tomorrow.
Happy Easter!
Love and peace,
Patty
Saturday, April 14, 2001 at 10:04 PM (CDT)
"Hi" friends,
As I was putting my head down on the pillow I realized I hadn't updated Julia's website. It was going to be Patty's night at the hospital but we decided it was best for mom to be home to do the girl's hair on Easter morning.
Al Michael of ABC's Monday Night Football will always be remembered for his famous comment as the 1980 USA Olympic hockey team defeated Russia to advance to the Gold Medal game. He said, "Do you believe in miracles? YES!" I have asked that question many times during the retreats I have facilitated. I love hearing peoples respones to that big question. Today, I echo Al Michaels words. YES, YES, YES! Miss Julia strolled out the front doors of the hospital this afternoon. It was her visit with mother nature since Valentines Day. Love and Miracles. I think I hear an Easter theme.
The Easter Bunny is coming soon so we better get to bed. Special hugs for Mommy, Kristen, Elizabeth, and Jamie.
Goodnight,
Julia and Daddy
Friday, April 13, 2001 at 07:45 PM (CDT)
Hi everyone,
When I caught up with Patty today at 3:30pm, she looked as though she just went 15 rounds in the ring. She spent the day working and talking with OT , PT ,RT ,speech therapy,Drs.,nurses, and dieticians. They are all preparing for us for Julia's departure. This may happen early next week. We will get a trial run on Easter Sunday with a day pass.
I was home with Kristen,Elizabeth, and Jamie cleaning the house for Julia's big return. It was a team effort as the kids cleaned their rooms while I worked on the rest of the house. They all earned a trip to McDonalds. Bribes still work! Actually McD's was not mentioned until after the work was complete. They wanted the house to look good for Jules, not the Easter Bunny. The kids are so excited to have their sister home.
Tomorrow will bring an egg hunt, the Easter Bunny, and another busy day for our Julia.
Julia says, "Hi," and I'll say, "Goodnight."
Peace,
Jay
Thursday, April 12, 2001 at 09:50 PM (CDT)
Dear Friends of Jules,
The days are busy for Julia as doctors work to modify the gamut of drugs she is on so that we can go home with a limited number and only necessary medications. Today she was the most awake I have yet to see her. Ever so slowly her sweet little personality is re-emerging and she continues to demonstrate that she is to be taken seriously, making strides in all that she attempts. Today, with her little pink braces strapped to her legs we velcroed her into a "stander." She demonstrated awesome head control and was vocalizing quite a bit in that upright position. She was a sight to see standing tall! Each milestone is cause for celebration and even a bit of bragging. Julia is somebody "really special." I've never met anyone quite like her...
Tonight, Holy Thursday, our family had the honor of presenting the healing oils. At first the girls were dismayed at having to miss a family bingo night at their school but Jamie reminded them that we were doing this "for Julia." It was a beautiful celebration, jam packed with people and an evening I am certain will remain in each of the Moran hearts forever. We are grateful to belong to such a rich community of believers to share in on the Triduum, as well as the rest of the liturgical year. Thankyou to the Community of St Bridget's!
Thats all for now folks! Goodnight!
Love and peace,
Patty
Wednesday, April 11, 2001 at 07:41 PM (CDT)
Hi Julia fans,
Not much to report today. Julia continues to move in the right direction. A direction that some day soon wiil lead her home to Strawberry Lane. Patty said Julia was sitting up for almost 10 seconds and OT and PT are happy with her progress. She is saying "Hi" more often. There was a very clear "Hi Da" earlier this evening. Weaning the morphine and sipping from her bottle are Julia's goals for tomorrow.
We just had a nice visit from one of the PICU nurses. She couldn't believe how good Julia looks. Julia even shocked her with a big "Hi".
Well, Julia's snoring is making me tired. I think I'll try to get some zzzs.
Goodnight fans,
Jay
Tuesday, April 10, 2001 at 09:22 PM (CDT)
Dear Friends of Jules,
Our most exciting news of the day was just given to me. After being transfused for a platelet count of 13,000 last night(remember those parameters are at 30,000) Julia's counts jumped to 91,000 this morning and are holding their own at the grand number of 52,000 this evening at 11 pm, a full 24 hours later. This is just wonderful as it may mean we can contemplate a day in between clinic visits if it continues. I also wonder if this could actually mean the megacariocytes(sp?) are forming once again in the bone marrow and in turn breaking into platelets. To me that would be the best news we could possibly receive as it would give us a bit of freedom from the hospital and mean her own marrow is healing. Help us hope against hope!!
Today I met with the Pain and Sedation doctors. Their job was to convert Julia's
I.V. meds to oral meds so we can get her home. The fetanyl which is 100 time more potent than morphine (no that's not a typo) was changed to a morphine dose today. We also ditched her antibiotics. One step closer to going home.
The Pain and Sedation doctor also happened to be the attending physician the night we arrived in the emergency room two months ago. He told the other doctors and nurses that it was the most stressful night of his entire career. While it was certainly no laughing matter I chuckle just a bit as I think it back to that night and how I was
barking out orders to him about who he needed to call in Minnesota and insisting he let me tell him all about her attributes as a Hurler babe. We weren't particularly fond of one another to say the least but ahh
with time both have come to appreciate and respect the other's position. Truly he had a hand in saving her life.
Finally, her therapists seem encouraged at her bits of progress. Her leg braces should be ready tomorrow and will go a long way in her assisting her on the road to standing. Tomorrow speech therapists will assess if she's ready to try a bit of food again. We will contine to work on sitting up a few seconds at a time. It wouldn't be far from the truth in saying that Jule"s is like a newborn and will have weeks if not months ahead of rehab. We have all the time in the world for you Julia!
Peace,
Patty
PS - Our neighbor in the PICU, six year old Taylor, had a successful heart transplant today. Please keep her and all the CCMC children in your prayers. Thanks!
Monday, April 09, 2001 at 07:47 PM (CDT)
Hello friends,
I can't believe I'm sitting here the hospital sweating. It's like a sauna in here. Every child in the unit has a mild fever and I bet the nurses and the parents do too. Even with the warmer temps., people are complaining. I wonder how they would have reacted to -40 degree weather in MN? What a day.
Speaking of the day, our little "Jules" had a great one. Our strolls around the hallways have now become field trips to other floors. Julia had 2 trips to the cafeteria today. One trip with mom and the other with me. She was busy with OT and PT today. She is getting stronger sitting up in her chair and carriage. Her necks seems steadier and she is reaching for objects. The PT staff is impressed with her progress. She was fitted for braces that will help her stand. Julila even had some smiles. What a beauty! I was almost brought to tears when I thought she whispered "Da-Da". Julia has a habit of doing that to us.
The Dr. was so excited to see Julia looking and acting better. She began making arrangements to get us out of here. The Dr. talked to the insurance company, medical suppliers, pharmacists and visiting nurses. We will have a nurse daily once Julia gets home. That will help us out tremendously. I remember looking out the window every day in ICU wondering if Julia would ever see the outside world again? This might happen soon. If it doesn't happen by Sunday, the Dr. promised us a day pass for Easter Sunday. How ironic, a miracle on Easter Sunday!
Yesterday when I was walking down the hallway with Julia I had a flashback to the day she was born. I recalled walking down the hallway at Manchester Memorial Hospital rubbing Patty's back while she was in labor with Julia. A few hours later our beautiful Julia was born. Our life has changed so much since that trip down the hallway at MMH. A change for the better. Thank you Jules.
Tomorrow is another big day. The goal is to get Julia to stand.
Thanks for visiting and keep those candles burning. Good night.
Jay
P.S. I have wriiten more in the last month then I did in 8 years of college!
Sunday, April 08, 2001 at 08:35 PM (CDT)
Dear Friends,
My intention was to get today's update done a bit earlier as we strive to create a schedule for Julia of day and night. (I wouldn't mind a schedule myself.) My little friend Jules has been wide awake for the past seven and a half hours and for the past three she hasn't been all that happy, we think demonstrating a bit of withdrawal
but nontheless leaving me to guess what it is that is going to help her settle out. She may not be tired but I am!
As talks continue about the possibility of going home our nurse is taking the time to teach me about pieces of her care designated only to them in the hospital. My understanding is that if they do a true wean from her sedatives we will be here a long time but from what I can surmise they're pushing to let us go home. They all know, we've been here too long. We all are aware that her care will be intense and so we might as well get on with the business of taking care of her, in our home as a family. We're ready.
There's a book I'd like to recommend to those of you who may want to understand what much of this experience has been like.
While it is not a complete parallel I believe many of our own thoughts and feelings are echoed in the book "The Power of the Powerless" by Christopher de Vinck.
As the bookcover states, "It is a moving testimony to the power God demonstrates in the weakest of vessels." From what I hear and see from those around me it is clear that Julia's life has made a tremendous impact on lives in a way that may never had happened if she hadn't been so sick. Understanding that impact may be made more tangible through the words of de Vinck.
My bed is calling me! Goodnight!!
Love and peace,
Patty
Saturday, April 07, 2001 at 09:01 PM (CDT)
Good evening "weekend webbies",
Julia started day 2 out of the PICU vomitting. After a few spit ups this afternoon, her feeds have been stopped until the morning. I think she'll be OK tomorrow. Julia seems to be more alert and is also trying to talk. Today we strolled around the hallway and also sat up in a chair for a 1/2 hour. After a nice visit from 3 PICU nurses, Julia is settled and watching ESPN.
Last night I attended the annual IAABO Central CT. Board 6 basketball officials banquet. I have been refereeing basketball for the past 23 years, the last 13 years on Board 6. I missed working hoop games, so I was anxious to see my fellow officials. Over 100 people approached me with hand shakes and hugs, asking about Julia and the Morans. We have received many nice notes and gifts over the last few months from Board 6, however to see their sincerity live was very touching. After a good meal and a few beers, the program started with me on the agenda. I spoke about Julia, cracked a few jokes, thanked everyone for their continued support, and asked them to keep praying. I was in awe as I returned to my seat. There wasn't a dry eye in the room. Basketball officiating isn't easy. Almost every time we make a call people are upset with us. The only ones ageeing with our calls are other referees. Many coaches say,"You Zebras(refs) always stick together." Hey coach, Julia and I agree with that call!
There are so many other people I would like to thank in person. For now I'll just say, THANKS!
Good night,
Jay
Friday, April 06, 2001 at 09:36 PM (CDT)
Dear Friends,
I am anxious to lay my weary bones down to sleep so I will keep this update brief. We made the big move today from the PICU up to the seventh floor. As promised, there are many adjustments to make. The ratio of patients per nurse changes dramatically and the change in the amount of time nurses spend in the room has decreased immensely. I was prepared and anticipated, as well as welcomed becoming her primary caretaker. While it is great news to be out of the PICU it has also left me asking some of the harder questions about what exactly Julia's care will entail. In daily increments we can handle it all and so we remind ourselves to take the days as they come.
Some of the other changes of the seventh floor are quite beneficial as well. We now have a bed right in Julia's room, as well as a shower. I am sure our PICU friends will miss the beautiful sight of the Moran's morning jaunt by the main desk to the shower each morning. I for one will no longer have to pray that the entire staff is not there to view my squinty eyes and hair sticking up. Sleeping in the room will also give us at least half a night of restful sleep. With one eye open the entire night we are certain to be here whenever Jule's needs us. Also our view has changed just a bit here on the new unit. We now overlook Washington Street, will have birdseye view of the new Dunkin Donuts being built, the vast amount of traffic racing by and a homeless person or two, which makes us realize our life isn't so bad afterall.
Julia had her first visit to the rehabilitation floor and though fairly sleepy even the physical therapist agrees she is making wee steps in the right direction. We also fitted Julia to a special chair to offer her support and get her into a sitting position fo a few minutes each day until she is more independent. A visit from the orthopedic doctor proved that her range of motion is still amazingly good and braces on her legs are not necessary. We are anxiuos to see what new and wonderful developments this next week will bring!
So much for being short and to the point...
xoxox
Patty
PS - There are still several openings for blood donors at Julia's blood drive on Sunday, April 22nd from 9 to 1:45. Please call Lisa Post at 644-9673 or Carol Zoef at 647-9575 to set up an appointment. An hour of your time to give blood will save a life. Thankyou! Love, Julia
Thursday, April 05, 2001 at 09:40 PM (CDT)
Dear Friends,
Our days continue to be punctuated with emotion! This morning plans to move Julia onto another floor out of the PICU were confirmed. It is a moment we longed for, begged for, prayed for and here it is at our doorstep ever so gently nudging us forward to the next chapter of Julia's life.
Tomorrow, pending an open bed on the seventh floor, we will leave Julia's home for the past several weeks and make a new one. The doctors, nurses, residents, nurse assistants, respiratory therapists and even secretaries we have come to affectionately know will no longer be a part of our daily routine. The safety zone of the PICU will be gone. We will be just a bit more independent on the next unit and heading towards total independence in caring for Jules in as soon as the end of next week. My head is assured that we will manage just fine while the corners of my heart are seeking solace in a future that cannot be found.
There are many new decisions to make regarding Julia's physical needs. Physical therapy is busy fitting her for a special chair that will offer her support, setting up an orthopedic evaluation and acquiring information about intense hospital rehab vs. home rehab. I've been inquiring about the possibility of home platelet transfusions (looks like a no go,) and anything else that might make life at home seem less chaotic. Even once out of the hospital we will be very closely linked to CCMC, making daily treks for her transfusions and checkups for her overall state of health.
Julia's respiratory issues are lessening. Though she still requires some RT the doctors are delighted by her xrays. We are getting rid of her diuretics one by one, as well as her sedation meds. While she still seems sleepier than what I would like Jay and I both believe she is responding to us. It will be weeks before her system clears out all the medication and Julia will be Julia. We've thrown away the calendars. Take all the time you need Jules.
Hug your kids just a little bit tighter tonight.
Love and peace,
Patty
Wednesday, April 04, 2001 at 10:23 PM (CDT)
Happy Spring,
Oh what a beautiful day. If you had a chance to get outside today, you were able to finally feel spring in the air. Sunshine, warmer temps., and yes it's baseball season. Julia and I watched the Yankees game tonight. It seems like yesterday that I was watching the Yankees in the World Series. Can Red Sox fans say this? I'm sorry that wasn't very nice!
Speaking of Julia, our little friend had another good day. Her xray looked great today and she went a day and a half before receiving platelets. The doctor removed her cental femoral line tonight leaving her with just her "hickman" line. A few weeks ago she had many new lines in her body. It is nice to see them gone. As far as pain and sedation goes. Oh no I'm starting talk like a doctor. Julia seemed much more alert this evening.
I had the pleasure of taking a stroll down the hallway late this afternoon with Julia and Patty. I too was the proud parent showing off Julia to everyone we passed. Thank you Julia and Patty for waiting for me. The little stroll down the hallway and back made my day.
We still have a tough road ahead of us. Yet we must stop and enjoy how far we have come in the last seven weeks. Conversations have begun about moving Julia out of ICU. We don't know exactly when the move will happen, however it's nice to know we are heading in that direction.
March Madness has concluded, but "The Dance" goes on "one day at a time!"
Later dudes,
Jay
Tuesday, April 03, 2001 at 08:17 PM (CDT)
Dear Friends,
The days have turned to weeks and the weeks to months. None of us would ever have quite believed a journey to be so intense, full of such sheer drama mixed with hope and hopelessnes, love and despair, light and darkness. I keep remiding myself that this is not a movie, that it is real and that it's our life. Sometimes it's hard to grasp all the contraindictions and backwardness of our situation. Yet within the experience there is great meaning and purpose (though we continue to sort it all through. If you've figured it out please let us in on it.)
Julia had quite a fruitful day! Though she is a bit zonked from yet another med they've added to the multitude of others, we actually got her up and went for a stroll down the hallway. That's right! I brought in her stroller from home and we packed her various equipment in the lower part of the stroller and off we went! It was a moment of real gratification! I was the proud momma showing off her babe to all the nurses, docs, respiratory therapists and residents who all so willingly obliged by oohing and aahing Julia. Our oufits were appropriate. Julia donned a white cotton dress with the words "I believe" and I sported a t-shirt stating "Expect miracles." Our new experiences didn't end with a walk. Once back to the room Julia sucked on a lollipop! While this may seem insignificant to the reader it was momentous to the Mom. Her little tongue wrapped around that pop with such delight, just a bit of enjoyment so deserved by Jules.
Jule's fan club continues to grow. While I normally do not like to be a name dropper I'm going to brag just a bit tonight. Larry Gold, CEO and President of CCMC has visited Julia regularly following all of our peaks and valleys. It is assuring to know at the helm is a man who takes the time to know who is serving and serves with compassion, working side by side with employees. My thoughts are echoed by those who work here who also admire his style. It is clear to see that all who are employed here follow his lead! Thankyou, Mr. Gold!!
Medically, Julia has a few issues to still overcome. Respiratory therapy is at the heart of getting her better with continued IPPB, massage and suctioning. Her oxygen saturation levels dropped off to the low nineties today causing me to nearly go into heart failure but nurses assure me she'll be fine. If we've made through the last seven weeks we can certainly manage this!
In Faith,
Patty
Monday, April 02, 2001 at 09:05 PM (CDT)
Dear Julia fans,
It's halftime of the men's NCAA basketball championship. I figure this is a good time to update Julia's website. I'm sure I'll be too tired to write after the game.
Julia is having another good day. Her xray this morning looked better then yesterday. She contiues to be weaned from her sedatives. Julia was sporting a new yellow sun dress. She certainly lit up my day. We are hoping for another sunshiny day tomorrow!
The other night I shared some of our "lighter" moments. Tonight I want to share some "special" ones. My favorite occured last evening. I walked in the room and saw Julia napping in her mom's lap without a tube in her mouth and dressed in a pretty dress. They both were so relaxed. It was such a special moment that the nurse snapped a photo. Then they asked me to jump in for a second shot. I would name the first picture "Sleeping Beauties" and the second, "Beauty and the Beast!" Watching Patty bathe Julia daily is awesome. I never thought one little daily task could express so much love.
Happy birthday Uncle Tom.
Shine on,
Jay
P.S. Sorry for the short, chopppy sentences. I'm tired.
P.S.S. The game just ended.
Sunday, April 01, 2001 at 09:22 PM (CDT)
Dear Friends of Julia,
It is a good day if I put on my mascara. It is a great day if I still have it on by the end of the day. Today my mascara is in place.
Julia is continuing all her respiratory therapies, including pulmozyne, mucomist and ventolin, chest massage and IPPB (intermittent positive pressure breaths) in the hopes of keeping her lungs open. There is a bit of concern of some collapse since extubation but all are championing around Julia to make sure that doesn't happen. Clinically speaking (those are the doctor's words not the mother's) Julia looks and acts great.
Actually, I think she looks wonderful. For the first time since Valentine's Day I got her dressed in a cotton, periwinkle spring dress with pantaloons. Her beautiful blue eyes open for a glimpse of the PICU and her movements appear to be calmer and far less sporadic. She is still on high doses of sedatives and we are continually weaning them down. Thus far, it is difficult to surmise what Julia can really take in and far too early to make predictions. I sense that she is able to "track" periodically, respond to my voice and has purposeful movements.
It has become far less of a production to hold Julia and so now we can both reap the benefits of snuggling close far more often.
The nurses were anxious to capture our happy moment and took a few pictures. For those of you who have seen Jules just imagine how far she has come to be able to get into pictures again!! A picture of her insides will be taken again tomorrow morning. Her xray will tell a tale. I hope it is one we want to hear. All prayers will be accepted!! Thankyou!!
oxoxox
Patty
PS Anyone who knows my husband knows writing could never do justice to his "funnies." Rest assured he has built himself quite a reputation at the
CCMC...
Saturday, March 31, 2001 at 10:02 PM (CST)
Hello friends,
The light keeps getting brighter and brighter across the USA. There have been almost 5000 visits to Julia's website and the flames keep burning.
Julia is having a good day. She continues to breathe well on her own. She is also doing a great job coughing up secretions. Sedatives have been weaned a little more today. Our weekend warrior has returned and is beginning to look more like our Jules.
Tonight it is calm and peaceful in the ICU. There is usually so much excitement around here. This pause in the action gives me opportunity to reflect on some of the "lighter" moments of the past several weeks. A few weekends back Patty tripped over some of Julia's wires and went flying across the room. Bang ,crash, boom! The doctors and nurses came running into the room to find Patty lying on the floor. Once they knew she was OK ,the laughing and "grace" comments continued for hours. Yesterday Patty ran past the front desk (without signing in) in a hurry to get to the ICU because Julia's breathing tube was being removed. Can you picture CCMC security chasing after her? I think she is "wanted" at the front desk. And who is the funny one in the family? I would share more but the clock is telling me that we are losing some sleep tonight. Never under estimate the power of laughter!
Thanks for visiting and keep those candles burning.
Good night,
Jay
P.S. Fix your watch. Spring ahead!
Friday, March 30, 2001 at 08:05 PM (CST)
Dear Friends,
WOW!! We are in total awe at the number of you who continue to hold Julia in prayer. Please know it is just tremendous for us to know so many of you keep the prayer trail blazing! The spirit of hope burns brightly coast to coast. Thankyou!
Our little Jules is having a great day. Her lung xray is about 90% better than it was and was optimal for taking her off the ventilator. At about 12:50 she began breathing all by herself and thus far is doing well with her oxygen saturation in the high 90's. We are cautiously optimistic that she will continue to hold her own, futher wean down all her sedatives and be able to get out of the ICU by early next week. (Having said all that, I guess I've forgotten the "one day at a time" rule.
Bad rule to break when you're in the ICU.)
Our little 3 and 1/2 year old friend Annalise died this afternoon. Her Mom and I met in early February here at the CCMC. Annalise had just returned to Ct from a five month stint down at Duke for a BMT for cancer and we, of course, had just returned from Minnesota. There was a mutual understanding, a knowingness of all that the other had been through within the hug we exchanged today. To see the loss of yet another child is heartbreaking. Please keep the Kelley family in your prayers tonight.
On the social side of events Elizabeth is at a Brownie sleepover at the Science Museum in West Hartford. Whatever happened to camping? Kristen will attend her first 5th grade social tomorrow evening and has made me promise that I will be home to "do" her hair for her because Daddy just doesn't know how to. Jamie was under the weather this morning with a fever and I had the privelege of caring for him while Jay stayed with Jules. It is a good feeling to know that the world continues to turn...
Love and Peace,
Patty
Thursday, March 29, 2001 at 09:24 PM (CST)
Good evening friends,
Today the xray showed that Julia's lungs looked better then yesterday. The doctors feel that Julia is ready to come off the ventilator tomorrow. We are both happy and scared. Please pray.
So many people across the USA have been praying for Julia. People have entered the guestbook from Maine to Florida,to the great plains and all the way from California. There are many miles between us,however a special little girl named Julia has brought us together. Tomorrow is a big day and it would be great if we could all join our hands and pray as one. Of course this is geographically impossible. But we can join our hearts through one simple task. Let us all light a candle tomorrow. A candle for Julia. May each burning flame remind us that we are one body seperated by miles yet joined together in hope, faith and love.
Shine on friends!
Love,
Julia,Jamie,Elizabeth,Kristen,
Patty and Jay
Wednesday, March 28, 2001 at 09:56 PM (CST)
Dear Friends,
At times it is easy to be enveloped in all the gloom and doom of the ICU. It is frustrating to hear Julia has another temperature requiring antibiotics, that they need to do cultures again, that her platelets are too low or that her lungs don't look any different then before. Each bit of bad news delivers a blow and you wonder sometimes if you have it in you to stand up again. It has been a long road. It has been a hard road.
Within all that seems so bleak and dreary we have been privy to goodness that seems to know no bounds. Our family has survived thus far because you have opened your arms and totally embraced us with love, generosity, prayer and most importantly a spirit of hope.
Each day after school our children have a neighborhood home to go to. They play with other children, are loved by other adults and one day will understand the depth of care we have recieved. For the past eight weeks, we have had wonderful meals put on our table twice a week so that the little time we are home with the children it is qualitative. On weekends friends and family have taken our children on excursions, giving Jay and I time together at the hospital. Cards have been delivered. E-mails are sent.
My own Mom and Dad have tied together so many of the loose ends for us so that we can concentrate on the important stuff. Jay's parents are forever waiting in the wings willing to do whatever we wish that would be helpful. Sisters, brothers, in-laws, aunts, uncles and cousins all offer continuing support. Nurses,doctors
and residents become caretakers of the entire family, helping us along the rough spots, answering our continuous questions, teaching us and supporting our decisions.
It is a difficult time, so difficult and yet the Godliness is here. In every meal, in every babysitter, in every ear that listens, in every card that is sent, in every e-mail received, in every culture taken, in every heart to heart chat,in every hug that is given, we have come to know God.
Thankyou!!
In Gratitude,
Jay, Patty,
Kristen, Elizabeth, Jamie and Julia
Tuesday, March 27, 2001 at 09:03 PM (CST)
Hello everyone,
Today's broncoscopy was canceled because the xray taken this morning showed that Julia's lungs were clearer than yesterday. Julia likes to change plans. She continues to need platelet transfusions. What will tomorrow bring?
As you know, my journal entries usually include a quote. Here are some of my favorites that I found on Julia's wall:
"Julia , friends forever." Love,Jamie.
"Roses are red,violets are blue, you are cute and I love you. Julia you are great sister by far." Love, Elizabeth.
"Julia, I love you." Love,Kristen.
By the way, I think Kristen, Eliazbeth, Jamie and Julia's mom is normal,abnormal, and extraordinary!
Peace,
Jay
Monday, March 26, 2001 at 10:29 PM (CST)
Dear Friends,
Upcoming days will be a time of challenge for Julia. Another broncoscopy is planned in the hopes of dissolving some of the thickness in her lower left lung. The doctors are contemplating getting her off the respirator again as the longer she stays on the more we will begin to battle infections. She will also undergo an EEG and MRI as a precautionary measure. She is on different meds now which allow her to open her eyes, though she isn't focused on what is happening around her due to so many narcotics being on board. Still it is wonderful to see those beautiful blue eyes. Platelets continue to be problematic. Tonight we were told there wouldn't be any available for her until tomorrow but somehow, we managed to receive just what she needed.
(This is for those of you who follow the guestbook.)
Though our situation is extraordinary, rest assured, we are not. We're just normal, abnormal people doing what anyone of you in a similar situation would do. Ask anyone in our family and I am sure you will get quite an ear full on all our not so nice attributes! Thank goodness for the grounding of family! Amen!!
Goodnight!
Love,
Patty
PS - We've added a couple of our favorite photos!
Sunday, March 25, 2001 at 09:56 PM (CST)
Good evening friends,
Julia has had a very quiet weekend. She continues to get therapy on her lungs. Her lungs have improved since Friday. I can't wait to see tomorrow's xray. This week's goal is to try to get the lungs open enough so the breathing tube can be removed again.
Tonight Patty, Kristen, Elizabeth, Jamie and I went to the youth group basketball game vs. the parents. I played on the parent team. It was alot of fun even though I missed a few easy shots. I didn't realize how much I missed working with the youth of our parish. Active involvement at St Bridget is "a pause that refreshes!"
Speaking of hoops. Every once and a while I'll pull out one of my favorite articles about former North Carolina State basketball coach, the late Jim Valvano. It is wriiten by Dick Vitale. In the article Dickie V. shares with us one of Jimmy V.'s last messages.
"To me there are three things everyone should do every day. Number one is laugh. You should laugh every day. Number two is think. Spend more time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that's a heck of a day."
Well, it has been a heck of a weekend.
Thank you for continued support and prayers.
Goodnight,
Jay
Saturday, March 24, 2001 at 10:41 PM (CST)
Dear Friends,
Everything I write seems void of real meaning tonight. So I will say only that which holds no superficiality in a time where meaning is so sought after and desired:
Please pray.
Love,
Patty
Friday, March 23, 2001 at 09:35 PM (CST)
Hello web friends,
Today was a long tough day for all of us. At noon today Julia was put back on the ventilator. Her lungs need more time to heal. We have to remember that our little Jules is still in charge. She will let us know when her lungs are ready.
Many people have said that our last six months have been like a ride on a roller coaster. Up one minute,down the next. I would compare it more specifically to Disney's Space Mountain. Up,down,scared,and most times in the dark not knowing where the next turn is going to take us. Of course the bravest always sit in the front seat. Make room Julia we want to sit up front with you.
Goodnight,
Jay
Thursday, March 22, 2001 at 07:52 PM (CST)
Dear Friends of Julia,
It has been another day to count our blessings! The doctors are pleased with the way Julia has been breathing off the ventilator for over 24 hours. I think we made it...no more vent. She is receiving IPPB (intermittent positive pressure breaths) periodically to help open up her lungs, particularly the area of the left lung which is collapsed. Oxygen boosts help her keep her saturation levels nice and healthy. Now that she's breathing on her own, sedation becomes a prominent issue.
We don't want to over sedate because that will impinge upon her breathing and so we are having difficulty finding a balance in which Julia gets peaceful rest and is not in a constant state of motion. It is quite exhausting being with her, as she moves incessantly and it isn't completely clear whether she is agitated or just moving involuntary. Believe me, this is a good problem to have in the larger scope of things.
We managed to get another piece of info today that really scared us. We were told that she has VRE (vancomyacin resistent enterroccoccys.) That means she has a bacteria in her urine that is resistent to antibiotics. We were initially told that it was "bad news." Suddenly "gloves," "gowns" and "isolation" became the words of the moment. By late afternoon we finally had a chance to dialogue with the infectious disease doctor. He gave this latest bit of news real perspective. "Getting off the vent is big news, really big, this is not."
Simply put, the bacteria is an issue for her but there are no huge ramifications and your body or mine are not in any way at risk. We were probably too tired to appreciate what he said but grateful, really grateful. It will be nice to go to bed without a worry...well almost.
Just FYI the surgery that was scheduled for her Hickman because the line had migrated into the right ventricle from the right aorta migrated back to where it belongs. While she eventually will have to have surgery to make sure it's stable the consensus was that getting her off the vent was more important.
Platelets continue to be a big issue. After two transfusions in the past 48 hours Julia's platelet levels didn't get past 25,ooo. Her parameters are 50,000. Since bleeding is an issue, the immediate plan is to put her on steroids, which will give her platelet levels a jumpstart. However, steroids suppress the immune system and canot be used as a longterm answer. Rounds with the doctors tomorrow morning should be interesting!
Sorry to be so technical tonight. I just wanted to cover the bases so as to not have the wrong info floating around.
Finally, my husband claims that if I have SMS then he must have SMSS (Stressed Mom Syndrome Sufferer.) Thank goodness for humor!!
Love to all,
Patty
Wednesday, March 21, 2001 at 10:23 PM (CST)
Hello friends,
Thank you for your continued kind words in the guest book. You don't know how supportive your simple words are to us.
Well, I'm tired and ready to say goodnight. It has been a very long day.
Oh by the way, Julia wanted a change for spring. At 2pm today the nurses removed the breathing tube and took her OFF the ventilator! For the past 9 1/2 hours she has been breathing well with the help of a little oxygen. She even fell alseep for over an hour in my lap. I hope she keeps up the good work through the night.
Can we say POTATOS! Amen.
Peace,
Jay
Tuesday, March 20, 2001 at 10:06 PM (CST)
Dear Friends,
Every once in a while I struggle with knowing what to report on as far as Julia's day is concerned. I want to give the positive reports... the rest I would like to just go away. Today I am aware of having SMS (stressed mother syndrome) and so my view might be more reflective of SMS rather than objective reporting. Having said all that, I will give the facts. Take my info as you will.
SMS is most probably related to the following new developments:
1. A blood culture showed both strep and staph (which is believed to be from a contaminated blood sample.) So, do I worry or not?
2. Her urine showed enterrococcys bacteria which they believe is real. Worry, but maybe not too much because they have antibiotics.
3. Her main leg line had to be changed. During the changing process they were concerned about a possible clot. An ultrasound disputed this theory. Too late,
I'm already worried.
4. Her Hickman line migrated from her right aorta to her right ventricle. Not good! Has to be fixed with surgery. Definitely worry when surgery is involved.
The great news of the day is that we finally have a blood drive underway! Keeney
Street School will be hosting a blood drive on Sunday, April 22nd from 9 to 2pm. People who would like to set up an appointment, volunteer to help or have questions can contact Lisa Post at 644-9673 or Carol Zoef at 647-9575. When you give blood you give life. On behalf of all the people who will receive your lifegiving blood THANKYOU!!
"Potatoes" to all,
Patty
Monday, March 19, 2001 at 09:13 PM (CST)
Good evening and Happy St. Joseph Day,
First I must inform you of two things. One, no spell check. Two, no gramma check! All you english wizards can now put your red pens away. That includes you Prof. Joe!
Julia had a busy day. They continue to do albuterol treatments to losen up her lungs. Also, she had a broncoscopy this afternoon. We hope to see improvements on tomorrow's xray. Julia's temps were around 100 all day with the latest being at 99.3.
Just like Patty I miss our little Jules. I can't wait to hear that sweet little voice yellling out, Daddy! I also miss her high fives and potatos. Tonight Julia woke up and opened both her eye lids. Although everything is blurry and confusing to her, it is so nice to see them open. Right now Julia is resting comfortably on her belly. It is the first time she has been on her belly in about 10 days. I love seeing her in this natural position.
Tonight I leave you all with a high five and a potato. Potatos on St. Joseph Day. Why not!
Goodnight friends,
Jay
Sunday, March 18, 2001 at 10:30 PM (CST)
In the darkness of the night I sit with Julia's fingers wrapped around my own, willing my love to flow into her. As I stare at her still little body and sweet face I am aware of how much I miss my little girl. I miss her scrunching up her nose and squinting her eyes with her pressed lip smile to make a funny little monkey face. I miss her trying to pucker up her lips and her slight lean foward letting me know to move closer so she can plant a kiss on me. I miss her clenching her little fist to do "potatoes," our little family secret (no more) that says "I love you, I think you're great, we're a team."
I miss my little girl who goes feet first, belly down down the stairs to the garage door demanding that I take her outside for a stroll. I miss our little Jules who wakes up two or three times a night and is only comforted by sleeping on our chest or tumbling into bed with us. I miss watching her play with Jamie, giggling at every move he makes. I miss giving her a tubbie and the delicious smell of my clean baby. I miss her dancing with us, bopping her whole little heart and soul to the beat of the music, never quite aware of what a crazy clan she belongs to. I miss you Jules.
Come dance again!
There are signs and signals that we are headed for a few issues in the coming days. Today Julia cranked up a fever of 103. They had to get her back on antibiotics and take another round of cultures of all her body fluids. I am fearful that whatever was "brewing" in her right lung is going to be problematic. I had been hopeful to get her off the vent before another infection began but I'm not so sure that's going to happen. Tomorrow we're scheduled for another broncoscopy. The plan is that this might might help get air back into the collapsed portion of her left lung, as well as break up whatever is down there. We have also begun albuterol treatments to help open up the airways and clear out the lungs.
No one has told us to get worried. Julia has overcome far bigger obstacles and we are certain she will again.
Come dance again!
In Faith,
Patty
Saturday, March 17, 2001 at 10:43 PM (CST)
Happy St. Patrick's Day,
I hope everyone enjoyed a liitle corn beef and cabbage. Julia continues to work hard. She still is getting her fair share of blood products. The doctors continue to discuss her ventilator. They hope to have her off it in 5-7 days. Of course that forecast can change by the next time you log on to this site. Stay tuned!
Over the past few days several visitors have mentioned how much better Julia looks to them. As a matter of fact most of them are in awe. She looks likes our beautiful "Jules". What a differance a week makes!
My alarm clock named Jamie woke me up at 6:20 am with a great big "Happy St. Patrick's Day!" He was so excited . He said, "Daddy let's go, we gotta get ready to go the parade." The parade didn't start until 11 am. Then he continued , "Daddy after the parade can we go see Julia and wish her a Happy St. Patrick's Day?" Wouldn't it be great, if we as adults, always spoke from the heart? No need for a "snooze" button!
Speaking of sleep,goodnight.
Jay
Friday, March 16, 2001 at 11:52 PM (CST)
Dear Friends of Julia,
No news is good news! With that, I'll sign off. Goodnight!
Patty
Thursday, March 15, 2001 at 04:37 PM (CST)
Hello Julia fans,
Today was another slow yet good day for Julia. The ventilator was weaned a little today and the goal tomorrow is to wean it some more. Keep up the good work "Jules". The only frustrations today are from the computer world. We had to give back the hospital lap top. I couldn't get my lap top to work and my first journal entry tonight got lost in cyber space. I'll take computer frustrations because you are AWESOME Julia!
Well sports fans March Madness has begun. Every where you go people are asking the same questions. Who did you pick for the final four? Who are the Cinderellas? Who will make it to Minneapols, MN? Who will walk away from the twin cities a winner? Isn't ironic that Patty and I ask similar questions? Will Julia make it out of ICU? Will Julia wear a glass slipper some day? Will we make it back to Minneapols? Will we be successful in the twin cities?
Well get back to your TVs and watch the NCAA Tournament ( The Big Dance) unfold. I look foward to having Julia home and having our "Big Dance".
Waiting to dance,
Jay
Wednesday, March 14, 2001 at 09:06 PM (CST)
Dear Friends of Julia,
Exactly four weeks ago tonight Julia stopped breathing and life was breathed back into her through the awesome CPR efforts of her Dad. Did you know he saved her life? I clearly remember thinking as she "came to" in the ambulance that we would be heading home in an hour or so. The naiivete(no spell check or dictionary) of my thoughts has been a saving grace throughout this entire journey. Though we have read, researched and consulted there is no preparatory regime sufficient for the emotional chaos that enters in uninvited.
In today there is peace. Julia is not only slowly healing, she looks like our sweet Jules once again. As she lay across my lap, grabbing hold of my finger, I gaze at her as any mother gazes at her sleeping child. I savor the present. The tiny "I love you Jules" from Jamie , the gentle caress from Elizabeth and kisses from Kristen make me know unmistakenly the strong bond they have with their sister. These are the scenes I will hold in my heart when I remember Julia in the hospital.
For sure, Julia's life has many challenges ahead of her. With "tomorrow" there are many unanswered questions. I do not try to answer these questions anymore for I don't have the answers and can't even pretend that I do. It is clear that God is in control and I but a passenger. But be assured I'll do my damndest to be an obnoxious backseat driver!
The good news: Ventilator turned down another notch, no fevers or emesis today,
no platelet transfusion needed and her CAT scans were free and clear of abcess!!
Come on Julia, we're all rootin for you!!
Love to all,
Patty
Tuesday, March 13, 2001 at 09:29 PM (CST)
Whatsuuuuuuuuuuuuuup,
Julia is the evening wiggle worm. No matter what the nurses give her to relax, it just wears off and the wiggling continues. She really enjoys spinning the doctors head. She just refuses to be sedated. She fights and fights. Julia definitely has a "winning" spirit. Today they weaned the vent a little more. They hope to wean it again tommorrow. Speaking of tommorrow, Julia goes for a follow up scan to make sure the docs aren't missing anything. Another busy day for "Jules".
It is hard to believe we have been here in the CCMC ICU for a month. Although it is has been a difficult journey, your continued support has helped us through some of the toughest days of our lives. Thank you. Tonight I looked back at all the respones on Julia's website. The same words are used over and over. They are: friends, family, strength, courage ,hope, prayer, God, faith and love. Put them all together and they spell JULIA!
Peace be the journey,
Jay
Monday, March 12, 2001 at 08:38 PM (CST)
Greetings!!
As I glanced back over our recent entries I have become acutely aware of being in a much different place tonight than three days ago. It is time to push Julia a bit to see if she can meet the challenge. The vent has been turned down and all antibiotics have been discontinued. Today low grade temps and emesis have been our only concerns. While there are predictions on what should happen over the course of the week, we find letting the future remain nebulous easier. Anticipating is just too hard.
Kristen, Elizabeth and Jamie have been awesome! It seems a bit unfair that they have to experience so much at such an innocent age and yet they have met each hardship with strength and resilence. We are so proud of them! The most difficult conversations we have had as parents revolve around sharing with them how sick Julia really is. Their own message of hope and trust in God has been a source of light. We love you Special K, French Fry and Buddy Boy!!
In Hope,
Patty
Sunday, March 11, 2001 at 10:09 PM (CST)
Hello Julia fans,
Well it looks like we have a weekend warrior. Julia likes her weekends. One doctor this morning said her lungs looked wonderful. Although her lungs are still not in the greatest shape, they have improved so much over the past two days. She has made some moves in the right direction on the ventilator. The goal tommorrow is to tweek that vent some more. The lung biopsy scheduled for tommorrow morning has been cancelled. Also, her belly which was 71 cms a week ago is now down to 62.5 cms.
Oh no, our little warrior realizes the weekend is coming to an end. At 9pm she spiked a fever. It is now just after 11pm and the fever seems to be saying goodnight. Jules, thank you for a good weekend!
As we start a new week we hope for the best for Julia. We continue to take one day at a time. A special good night goes out to Julia's heros: Kristen , Elizabeth, Jamie and a very special lady called Mommy!
With "Hope for Julia",
Jay
.
Saturday, March 10, 2001 at 08:51 PM (CST)
Dear , Web Friends
We're in the race again!! This morning's xray of Julia's lungs showed an incredible improvement over yesterday's. It was not what we expected and I can't quite describe the feeling of knowing Julia's chances of pulling out of this increased immensely. The doctors once again find themselves astounded by her bounce back. They actually thought they had the wrong xray because it looked so good. The ultimate goal for this week is to get her off the ventilator. Tonight her lungs are sounding "really good" leading us to believe that tomorrow they will begin to wean her if only a bit. Julia's incredible saga continues...YOU GO GIRL!!!
Peace,
Patty
Friday, March 09, 2001 at 08:23 PM (CST)
Dear Friends,
We managed another day at the PICU at CCMC!! Julia began her day with a successful dialysis taking off about four and half pounds of water!! Despite this, the fluid in her lungs remains and her lungs appear to be only a tiny bit better. The lung biopsy will have to wait until Monday due to scheduling conflicts in the OR. The kidney biopsy was nixed after a conversation with doctors in Minnesota that suggested the risks outweighed the benefits. The next few days will tell us more about Julia's future. We ask that you to continue pray for God's healing hand to
touch Julia and our family.
With Love,
Patty
Thursday, March 08, 2001 at 10:13 PM (CST)
Dear Friends,
With everyday that we do not move forward it becomes more difficult to leave Julia's bedside. I have sensed during "morning rounds" a certain frustration and heaviness at Julia's lack of progress by the residents, doctors, and nurses. My own heart and thoughts become heavier as I try balance a hopefulness against the raw reality of all that Julia is up against. The doctors have spent more time with us, an arm is wrapped around my shoulder, I see them gently shake their heads. I notice.
Tomorrow will be a long day. Dialysis is on the agenda again in hopes of ridding her of all the excess pulmonary fluid. There is too much fluid. An open lung biopsy is tentatively scheduled for the afternoon in hopes of figuring out what this wetness is all about. A kidney biopsy at the same time may help them to understand why the kidneys are failing to function correctly. Maybe they will find the answer to help our Julia. The only real certainty we have is knowing that the more you love, the more it hurts. We love you Jules!!
In "Hope for Julia
Wednesday, March 07, 2001 at 10:19 PM (CST)
Hello friends of "Jules",
Today was another slow day in ICU for Julia. Not much change from yesterday. Tonight's nurse said, "Julia is stable and continues to work hard!"
I once read a quote, "One touch is worth ten thousand words." This evening I held my beauitful "Jules" for the first time in three weeks. .............Goodnight!
Love,
Jay
Tuesday, March 06, 2001 at 10:35 PM (CST)
Dear Friends,
As the days turn into weeks it becomes more difficult to give daily updates on Julia's condition. The healing process is happening ever so slowly. I am hesitant to offer up details about today that will be quite different tomorrow. Today the doctor suggested that perhaps it would be helpful if Julia would follow the "rule book." Julia, being the beautiful, unique person that she is likes to be different and certainly doesn't believe in the rules. It's what makes her so wonderful! She keeps us all in a continual cycle of learning, testing our limits and making us strive and reach for more. My child, my teacher.
The experience of being here at the Connecticut Childrens' Medical Center continues to be lifegiving. Though our wish would be to never have to be here the reality is that we are. And so during the past three weeks we have had the opportunity to meet and know many intriguing people. The nurses here become friends. It is difficult to not get to know them as they care for Julia for twelve and sometimes sixteen hour shifts. We exchange our lives with one another as we attend to a life that hangs in the balance. There is something about this hospital setting that leaves people open and unguarded. It is refreshing and speaks to the fragility of all of our lives that makes us want to love and be loved.
Monday, March 05, 2001 at 08:59 PM (CST)
Dear Friends,
First and foremost we would like to thank all those who offered their own lifegiving blood to help Julia. Unfortunately, it isn't as simple as finding a blood match. She receives "single donor cross matched" platelets which means that before any platelets are given it is tested with her serum to see what the reaction will be. Single donor platelets are harder to come by, teamed with the necessary cross matching, getting platelets continues to be an issue. I am pleased to say they did come up with some for today and tomorrow. Presently, she is getting a transfusion.
There are no real changes to report. We are anxious to have her upgraded from critical to stable but have been told that won't happen until she is off the respirator.Our days are full helping the nurses care for Julia, consulting with doctors and overseeing her care in general. It has been a privilege to work with so many dedicated professionals whose care for Julia extends beyond the walls of this hospital. Compassion in action is a beautiful sight.
In "Hope for Julia,"
Patty
PS - We are hopeful of having pictures soon!
Sunday, March 04, 2001 at 10:51 PM (CST)
Dear Friends,
We are sad to pass along the news of our little Hurler friend Jaxon. We met Jaxon our first week in Minnesota and supposedly his last. On the day we met him he was admitted back into the hospital. We commend and admire Jenn and Brett for their courage and faith in the face of such adversity. They spent eight months in Minnesota doing everything possible to help their little guy. On Friday Jaxon died. Despite the pain
and the loss that is beyond words Jenn and Brett have expressed gratitude over and over for the love Jaxon has brought into their lives. The paradoxes of life grab hold of our hands and hearts to lead us. Please pray for Jaxon and his family.
There is not too much new to report on Julia. The going is slow. The Red Cross has told staff here that they have exhausted all avenues nationwide to get matched platelets for Julia for tomorrow. She is using blood product faster than they can supply it which is more than a bit disconcerting to us. As we come face to face with the demands of life in the intensive care unit we ask that you consider giving the gift of life, give blood when the opportunity presents itself. You could really being saving someone's life. Tomorrow there will be a new plan for Julia. Let us hope and pray she is one day closer to being healed.
Peace,
Patty
Saturday, March 03, 2001 at 10:02 PM (CST)
Dear friends of Julia,
Today the Dr. "tweeked" Julia's ventilator a little bit and he plans on doing it again tomorrow. Julia is moving slow, however, she seems to be moving in the right direction! You go Girl!
Kristen, Elizabeth, Jamie and I went to the Big East women's game between St.John's and Villanova. St. John's practiced at Saint Joseph College on Friday and the coach wanted the Moran kids to sit behind the bench and meet the team. The game was horrible,but the kids enjoyed meeting the Red Storm coaches before the game. No Shea Ralph or Sue Bird, but we stiil had fun. Julia has even touched the teams in the Big East.
Tonight Patty and I went out for an hour and had dinner with the Bradys. It was a nice break. I'm on the hospital shift tonight because Patty doesn't want to be stuck home buried in 4 feet of snow on Monday morning. Lucky me! If we wanted to see winter we would have stayed in Minnesota!
I'm tired but before I go to sleep I'm reminded of a qoute," Give your troubles to God; He'll be up all night anyway!" Amen.
Good night and please remember our friend Jaxon in your prayers.
With "Hope for Julia"
Jay
Friday, March 02, 2001 at 08:17 PM (CST)
Dear Julia fans,
It's Friday night and Patty has gone home exhausted to spend some quality time with Kristen,Elizabeth,and Jamie. The "ID" Dr. just stopped by to inform me that the culture taken from Julia's nose seems to be" non-fungal". He said it was good news, then hesitated and stated it was great news! He also was happy that Julia hasn't had a fever in 2 days. He thinks we are starting to get the infection in her lungs under control. I could tell by his smile that he was excited to deliver some good news. Good job "Jules"!
I carry in my pocket a poem by Emily Matthews called "One Day at a Time".
"Whatever the goal we are pursuing,no matter how rugged the
climb, we're certain to get there by trying our best, and taking
one day at a time. "Forever" is hard to imagine, "the future"
may seem so far away, but every new dawn brings a wonderful
chance to do what we can on that day."
Everyday Julia's climbs are rugged and she's doing her very best along with the Drs. and nurses and her mom and dad and sisters and brother. "Forever and the future " are words that are tough to absorb right now. However, Julia has taught us to embrace each new day with unembarassed love. She lies in ICU, yet she continues to hug us all. Thanks Julia, I love living "One Day at a Time"!
With "Hope for Julia",
Jay
Thursday, March 01, 2001 at 01:02 PM (CST)
Julia's room has a view. The ceiling to floor windows lend a hand in letting us see the outside world. As I watch people go by I wonder about their stories and why they might be here. Cars travel by with an occasional one stopping to pickup or drop off. A woman walks by with a child by the hand. White coats scurry across the quad. It is a normal view and yet it is an amazing view. Life continues. Life goes on. Inside these four walls we sit waiting. Waiting for Julia to get better, waiting to be one of the people on the outside. Waiting. And yet somehow we know once we are out there life will be quite different. We are grateful for a room with a "view."
Life has become so much richer.
Day to day Julia keeps the doctors guessing. There are daily changes, sometimes good developments and sometimes developments that feel like we are going backwards. A whole gamut of cultures has been taken and we are waiting for confirmation of what and if Julia has something new. All signs point towards pnuemonia. The stories that we hear of other Hurler children leaves us hopeful. It isn't time to get too worried. It's time to wait, simply wait.
Tuesday, February 27, 2001 at 08:57 PM (CST)
We are experiencing "technical frustrations" with this website...stay tuned. Advice on dealing with the personality of a computer are most welcome. Yelling and threatening are getting us nowhere!
Hmmmm...this has the vague feeling of some other role...parenting perhaps.
Love to all,
Jay and Patty
Monday, February 26, 2001 at 08:18 PM (CST)
Dear Friends,
While Julia seems to be "holding her own," it is clear that everyday we won't necessarily move forward. Today was that kind of day. A fever that has hung around for the past two days warranted cultures of blood, urine and sputem. So far, preliminary test results all show up negative. Our experience says never to trust preliminary results. Today I witnessed a "live" broncoscopy and bronchial alveolar lavage. It sounds pretty fancy, however the former is just a picture of the inside of the lungs and the latter a washing of the lung. Nonetheless, I have to admit I was facinated by what medicine can do and horrified at the same time that they needed to perform the procedure on my daughter. Our knowledge of medical lingo grows. It is a bit disconcerting to know our resevoir of medical terms has accumalated in just the past six months. Life experience is by far the best teacher.
We welcomed a phone call this morning from Charlie Peters, Julia's BMT doctor in Minnesota. While we have come to have great faith in the doctors here at Ct Childrens' Medical Center, it is reaasuring to know that even 13oo miles away Dr. Peters still stays on top of Julia's case. It was great to hear him say, "We're all pulling for you, thinking about you and praying for you." Both brilliant and humble! I love it!!
Thanks to all who have signed our guestbook.
So far, well over 200 people have visited this website. It's been a tremendous way to keep people posted. Thanks for your support!
Love and peace,
Patty
Monday, February 26, 2001 at 08:18 PM (CST)
Dear Friends,
While Julia seems to be "holding her own," it is clear that everyday we won't necessarily move forward. Today was that kind of day. A fever that has hung around for the past two days warranted cultures of blood, urine and sputem. So far, preliminary test results all show up negative. Our experience says never to trust preliminary results. Today I witnessed a "live" broncoscopy and bronchial alveolar lavage. It sounds pretty fancy, however the former is just a picture of the inside of the lungs and the latter a washing of the lung. Nonetheless, I have to admit I was facinated by what medicine can do and horrified at the same time that they needed to perform the procedure on my daughter. Our knowledge of medical lingo grows. It is a bit disconcerting to know our resevoir of medical terms has accumalated in just the past six months. Life experience is by far the best teacher.
We welcomed a phone call this morning from Charlie Peters, Julia's BMT doctor in Minnesota. While we have come to have great faith in the doctors here at Ct Childrens' Medical Center, it is reaasuring to know that even 13oo miles away Dr. Peters still stays on top of Julia's case. It was great to hear him say, "We're all pulling for you, thinking about you and praying for you." Both brilliant and humble! I love it!!
Thanks to all who have signed our guestbook.
So far, well over 200 people have visited this website. It's been a tremendous way to keep people posted. Thanks for your support!
Love and peace,
Patty
Sunday, February 25, 2001 at 05:01 PM (CST)
In rounds this morning it was clear the doctors got a great deal of satisfaction out of how well Julia continues to do. I got a sense that this is why they are doctors. Not for the guts and the glory but to rejoice in the hopefulness that their skills offer a child like Julia. We all wish the end of this story would be "and they lived happily ever after," but
there is no magic globe to tell us about her future, our future. Believe it or not we are grateful for that, as it allows us to live purely in the present. That is a gift!!
Not only does Julia seem to be more stable, she continues to to do well on lowered ventilator rates. They actually told us that she could be weaned in a day or two which is a big picture change from just two days ago. She has brief waking periods and is not happy with all the tubes that are attached to her person. We've been warned that she will probably be more difficult to take care of once they deintabate. That's okay with us. I think we will all welcome the sounds of a cranky baby.
Peace,
Jay and Patty
Saturday, February 24, 2001 at 09:53 PM (CST)
All is calm. Julia had an uneventful day. We have come to treasure and hold tight onto these days. Slowly, they are weaning her off the ventilator and by the end of the week we believe she may be breathing on her own. But we have learned not to overanticipate. Day by day we will have the answers we need.
Jay headed home tonight with Elizabeth and Jamie. It is time for life to resume some kind of rhythm. I am sure the they are eager to lay their head on their own pillow and will even welcome having a parent at hand. Kristen is spending the night with me at the hospital and I am grateful for a bit of "one to one" with her. Somehow I just know that this particular time in her life will have everlasting effects. Life's great moments have a way of doing that.
Peace,
Patty
Friday, February 23, 2001 at 08:45 PM (CST)
Dear Friends,
Nine days ago one would have had a hard time believing that this beautiful child, our Julia, could make it through the night. Day by day inch by inch she fights for life. Today, though she remains in critical but stable condition we are aware of the great strides she has made. Doctors are truly amazed by this little girl! We are too!
Julia has made it off the ocillator and onto the conventional respirator, she is off dialysis, her blood pressure is almost under control, her lungs sound beautiful and we are actually able to realistically contemplate holding her in our arms again.
The road ahead promises to be filled with challenge. For now we will focus on today and the hope it brings to Julia!
With "Hope for Julia,"
Jay and Patty
Friday, February 23, 2001 at 08:45 PM (CST)
Dear Friends,
Nine days ago one would have had a hard time believing that this beautiful child, our Julia, could make it through the night. Day by day inch by inch she fights for life. Today, though she remains in critical but stable condition we are aware of the great strides she has made. Doctors are truly amazed by this little girl! We are too!
Julia has made it off the ocillator and onto the conventional respirator, she is off dialysis, her blood pressure is almost under control, her lungs sound beautiful and we are actually able to realistically contemplate holding her in our arms again.
The road ahead promises to be filled with challenge. For now we will focus on today and the hope it brings to Julia!
With "Hope for Julia,"
Jay and Patty
Saturday, February 24, 2001 at 07:56 PM (CST)
All is calm. Julia had an uneventful day. We have come to treasure and hold tight to these days. She is being weaned from the ventilator slowly and we believe she may be off by the end of the week. But we have learned it is best not to overanticipate. The answers will come, day by day.
Jay headed home tonight with Elizabeth and Jamie. It is time for life to resume a normal rhythm. I am sure they are eager to sleep in their own beds and even to have a parent at hand. Kristen is spending the night here at the hospital with me. It is good to have a bit of "one to one" with her. I am certain this time in her life will have an everlasting effect. Life's greatest moments have a way of doing that.
Peace,
Patty
Saturday, February 24, 2001 at 07:56 PM (CST)
All is calm. Julia had an uneventful day. We have come to treasure and hold tight to these days. She is being weaned from the ventilator slowly and we believe she may be off by the end of the week. But we have learned it is best not to overanticipate. The answers will come, day by day.
Jay headed home tonight with Elizabeth and Jamie. It is time for life to resume a normal rhythm. I am sure they are eager to sleep in their own beds and even to have a parent at hand. Kristen is spending the night here at the hospital with me. It is good to have a bit of "one to one" with her. I am certain this time in her life will have an everlasting effect. Life's greatest moments have a way of doing that.
Peace,
Patty
Friday, February 23, 2001 at 08:45 PM (CST)
Dear Friends,
Nine days ago one would have had a hard time believing that this beautiful child, our Julia, could make it through the night. Day by day inch by inch she fights for life. Today, though she remains in critical but stable condition we are aware of the great strides she has made. Doctors are truly amazed by this little girl! We are too!
Julia has made it off the ocillator and onto the conventional respirator, she is off dialysis, her blood pressure is almost under control, her lungs sound beautiful and we are actually able to realistically contemplate holding her in our arms again.
The road ahead promises to be filled with challenge. For now we will focus on today and the hope it brings to Julia!
With "Hope for Julia,"
Jay and Patty
Click here to go back to the main page.
----End of History----