History

Journal History

Friday, March 12, 2010 2:41 PM CST

Hello All,
I feel like we have lost touch with every one,especially since Pie's decent to Heaven.
It has been a full year now with out our Pie bear and not a day goes by that we arent still mourning him.
we know he is all around us and he lets us know at times.
We are comforted in knowing that his angels just came and got him that morning, as he looked so at peace.
He is buried exactly one mile from his home and has a beautiful spot that we have continued to go to at least once a week if not more sine he passed even this winter in the snow. we have a beaten path. He has a nice bird feeder hanging in a tree that over hangs is spot and we have been waiting for birds to come. Pie did sure did teach us alot while he was here. His little sister misses him so much it is sad at times. She looks up at the sky and says"Home"! and then starts blowing kisses. she is so sweet. Thank God we have her she keeps us going thats for sure. Her page will be updated too so feel free to check it out. We are finally getting spring like weather here in Maine and Keely cant wait to plant Pies flowers and take his new Angels to the cemetary he has new ones and his spot always looks beautiful. Something that Pie and his momma shared was a green thumb.
Hugs to All.
Julie
What the heart has once known, it shall never forget.
Author Unknown.

Monday, March 9, 2009 6:49 AM CDT

Friends and Family,

Our precious Pie left us early Sunday Morning, March 8th in his sleep.
With all his treasures surrounding him.
As ovewhelming sadness grips us all we need all of you.
you all have special meaning to us.
we truley beleive that Pie fought as long as he could.
A cure was just not to be and he couldnt do it any longer.
We are going to miss him so very much.
He was such a big part of our lives and always will be.
We all sourounded him and kissed him goodby for now.
I know with all my heart we will see him again.
I will update this later today with the funeral arrangements.
Julie

Thursday, June 7, 2007 7:49 PM CDT

Hello All,
I have been forever trying to get these pages upated so be prepared for a long story.
Pie is doing pretty good you all wouldnt beleive how big he has gotten well he is 6 almost 7 now and we thank God for that every day.
Pie has been going to school since last September and the teacher comes to him:)
Her name is Clarissa and she is a God send she is so caring and gives Pie total one on one and he loves School well most days any ways...lol
He has his days when he thinks Clarissa should do all the work by her self...but she doesnt let him away with that.
he paints and glues and works very hard at it.Clarissa reads to him takes him for walks and even field trips which he likes.
On selected days he actually joins his class at the big school and the other children love him.
Once one of the little girls introduced him to a teacher and said this is Michael and he drools a really lot.
And one day his friend Frank popped a bubble he made.
They really like him a whole lot.
But whats not to love about Michael any ways.
We can hardly beleive how big he is and continues to be smart even tho he is locked in that little body he truley amazes us all.
He had eye surgery in November that was very scary. They had to do a corneal transplant on his left eye and they stiched it a little on the side so his eye will keep some moisture in there.
He has to have constant eye drops to keep them moist and a eye cover up at night due to them not staying shut when he sleeps.
This week he had to have a toenail removed it has been a constant ingrown toenail and some times would get infected so they needed to get rid of it.
Also Keely discovered he has a few real loose teeth the baby teeth that it took so long to get want out!
Michael just loves to watch his movies and listen to his MP3 player which has stories and music on them.
He is a very big and brave boy and handsome too I tell him that all the time.
He still continues to get around and out and about as much as possible. He never ever complaines but then again he never did.
Keely said there wasnt a word out of him when they took the toenail out.
All and all he is doing pretty good and we ask you to think of him in your prayers.
I promise to try to update more.
Luv to All,
Julie

Friday, September 29, 2006 3:21 PM CDT

Hello All
It has been a year since writing in Pies Journal!
So I do indeed have alot to write about. Michael "PIE"
turns 6 years old tomorrow Saturday September 30th.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
HAPPY BIRTHDAY TO THE HANDSOMEST BIGGEST BRAVEST LITTLE MAN WE KNOW. WE LOVE YOU TOO THE MOON AND BACK.

Well as Pie turns 6 He is now enrolled in kindergarten and has a teacher that comes to his house every day.
Yes you heard me right.
We can not beleive how he has responded to the stimulation he receives daily doing his schooling.
He has a wonderful teacher who works with him and when he even thinks about fussing or nodding off she says"Pie you know I cant do this by myself...lol
We have never seen Pie respond like this he just seems to love it so and the stimulation is so good for him.
He is in a class even tho he can go to be with the other kids he will be invited to their outings and even class pictures we are so so excited about all this.
Last week he went on a field trip to his teachers family farm he got to see baby cows and went to see and get a pumkin or two.
In July he went to New Hampshire with His Mom , Daddy Mark and his sister. He went on rides at Santa's village and at Story land and I hope you are sitting down for this one. He even climbed all the way to the top of Mount Washington. This Michael Pie has been every where he was such a trooper and had such a good time.
These days Pie has gotten taller and has gained a little weight not much but better than he was.
In August he went to all his Dr's in Portland and they gave him reave reviews his Genetisist was so pleased and unable to beleive how well he is doing and has done.
She gave us all credit for the wonderful care he gets.
We wouldnt have it any other way he deserves that and so much more than we can ever give him.
His Momma nd Daddy Mark take him to do and see things with his sister and he is never left behind he does every thing that he can safetly do.
He continues to enjoy Music, Stories and being held he sure is a cuddle bug.
I have updoaded some new picture so you can all see how he has grown.
We ask that on this his 6th Birthday that you will all say a prayer for a safe and healthy winter for Pie and that he continues to do well.
Hugs, to All

Friday, September 30, 2005 9:22 AM CDT

Happy Birthday Sweet Pie xoxoxoxoxox

Hi All,
Thanks for all the e mails.
Today our sweet boy turns Five years old! What a special day for all.
Pie has done well and we Pray for him to continue to.
He has grown so big and tall and he just amazes us as he is so alert most of the time and he is so incredibly brave.
Day by day he fights this disease with all his being and we just love his spirit.
He has has a little set back as right now he is batteling kidney stones of some sort, he is still being treated he has a urinary tract infection and is on an antibiotic.
We had to increase his fluid and try to flush his kidneys and this isnt working well because he gets extra phlem?
On Monday he will have a kidney ultrasound done to investagate further. Please Pray he will get over this. Inspite of this he never complains at all.
These days he enjoys cartoons and his music as he always has and he loves being held and cuddled which we cant get enough of ever!
I cant beleive that he has gotten so big he is 27 lbs now and i know that doesnt seem like a lot for 5 but he has always had a hard time with weight gain.
He loves to come to nanny and grampies and he gets lots of Love where ever he goes.
In his 5 young years he has given us so much, tought us so much and we feel so Blessed to have him in our lives.
I keep asking God in Prayer for a miracle and yet, he has given us Miracles with Pie being 5 now and his sister doing so well with her transplant.
I do have Hope that there is a cure for all our beautiful Krabbe children.
I still continue to get the word out to all the Doctors I work with and research how genetics is moving along.
We must Beleive and we must have Faith hard as it is some times.
Pie continues on the same meds no increases so that is a good thing too.
At this point we just give him the best of care and fight to make sure that he gets that from the Doctors and nurses that see him when needed.
We try very hard to make sure he doesnt wait for any thing he needs or wants. He has every comfort we can think of and so so much love all around him every minuite.
His sister just loves him so much and blows him kisses wants to hold him and we let her she is so gentle with him.
check out the pics.
I will close for now Please keep him in your Prayers and wish him a Happy Birthday, we have a huge party planned for tomorrow he will have a lot of guests from near and far.
God Bless you all,
Julie

Tuesday, June 14, 2005 6:07 PM CDT

Hi All,
I just had to get these pages updated.Sorry it has been so long.
Pie is growing and after giving us an awful scare a week ago he is doing alot better he has a nasty virus and had to go to the E.R and get antibiotics and tests done, Seems he cought the same bug that has his little sister in the hospital a few weeks ago.
Poor little man he was so sick, but with lots of T.L.C. HE is doing lots better and handsome as ever.
Michael does well most of the time and still stays alert and continues to enjoy T.V and music.
It is still diffucult to pick him up and hold him as it causes him so much discomfort he is very stiff especially his legs and there doesnt seem to be any thing they can do about it?
Pie never complains he is such a Brave little man.
He knows one thing and that is that he is loved and cared for in the best possible ways.
His days are usually busy and he comes to Nana and Grampa's at least once a week as I have said before they live a half hour away now so its not as convient as it use to be to have him here every day, But we try:)
He love to come here he knows this place is like his home and he stays awake the whole time ususally just so he doesnt miss any thing. lol
His meds have not ever changed and he is still only on oxygen at night and does well with all that.
He has gotten tall in the past year and his hair grows faster than ever.
Pie just loves his sister and wants to be with her and hear her. She in return gets mad if he isnt right with her belive me if we take him and not her she is upset.
When she went to surgery he came her to stay and she didnt get to come and she was so upset that we took her brother and not her too. and Keely asked her is she was mad because we took pie and not her and she said yes and then she asked her if she wanted to come with Nana too and she said yes! she was heartbroken, so dont take her brother with out taking her...lol
Pie would like to also let you know that his Mom and Daddy Mark were married on May 7th it was beautiful and Pie had his very own Tuxedo he bought with his own money.
He was so very hansome and was also in the wedding.
I have some pictures added so be sure and check them out!
Please keep him close in Prayer and may God Bless you all.
Julie

Sunday, December 5, 2004 7:26 PM CST

Hello All,
Today we celebrated Michaela's Birthday so I got to spend some time with Pie:)
He s sweet as ever and getting to be a very big boy now.
He was sleeping for a while and then he woke up and nannie had fun talkig to him and holding him.
My heart breaks for our little man he is so good and almost never complains about a thing.
Recently we have found out that both of Pies hips are out and ahead this is causing him pain and discomfort when moved or when he had therapy so they have had to stop the therapy for now.
He is scheduled to see a pediatric orthopedic Doctor the 23rd of this month to decide what to do about releiving the pain and discomfort. I guess there is a couple of things they may suggest one being cutting the abductor muscles so his legs would not be so tight? I am going to write to Dr. K. and ask her opinion on a few things she is always willing to help, thank goodness.
We will have to Pray for some direction here and make the best choice for Pie.
Pie is getting very big now tall and he just looks like such a little man.
He is comming tomorrow for a visit with nanna and grampa, we love that and he loves to come here.
Itis comical because when he is here he wont sleep he is wide eyed and love to watch his shows in the big screen t.v. he does enjoy the tv and stereo.
His mom buys him story books to listen too and he loves those. We are looking at new ones for Santa to bring.
Moat of the time Pie seems very comfortable and he loves to listen to his sister talk to him he still reacts by turning his head to see her and listen to her.
I keep Praying they will come up with some thing to help him I do so wish he could have had the transplant. But I have to believe God knew best and it wasnt to be.
God has had a plan for him from day one. One that we may never know but i do know this and that is he has given us so much by letting us have Pie and learn from him and just love him. He does know he is loved and he gets the very best care in all ways.
I ask you all to contiue to keep Pie in your Prayers that God will keep him well and help us to make the right decisions as far as a possible surgery.
We want what is best for him.
May you all have a blessed Christmas and a Happy New Year.
Julie

Thursday, September 30, 2004 8:50 AM CDT

Happy Birthday Little Man.
Four years ago today we didnt know what Lied ahead for you and How blessed we are that you eneterd our lives and changed them forever Four years ago today.
If only this disease hadnt got hold of you..... Krabbes I wish we and so many others had never to hear of it.
You would be running , laughing gigaling and giving us a run for our money. that was not to be. But no fear lil man for you have taught us so very much.
More than most children teach, for since your diagnosis we have learned to Love fully and unconditanaly.
How to love stronger and deaper. How never to take forgranted all the little things.
You have tought us that nothing elese matters but life it self.
You teach us daily how to be brave for that is what you are Brave and Beautiful.
Oh Pie we love you so much. We love your little kisses and cuddle time.
We love every breath you take and every expression you make.
Every moment with you is such a blessing.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I am sorry for I havent updated the childrens pages all summer it has been a challenging summer and very busy.
I think of you all and try to keep checking the board.
Pie is soing well and we are so thankful. In four years his meds havent had to be changed and he does well. He never complains he never has.
He is so big now still slim but just right the docs say.
He only has to be on oxygen at night while he sleeps.
His day consists of bathing mouth care cartoons and music.
He hangs out with his little sister who just loves her Big Brother and wants him right near at all times.
He also loves to listen to her and will turn his head when she jabbers to him and especially loves it when she careses his fair and face gently.
I am sure Pie knows just how much he is loved for he fights every day to live and he is so very Brave. He is our hero for sure.
Pie gets therapy several times a week, his little legs are so tight despite the Botox injections. Sure wish we could do some thing for that.
Other wise he has done well and doesnt at this time seem to be prgressing which is such a blessing.
We Pray daily for a treatment for Pie and our other Krabbe children who are fighting for tier little lives.
Pie gets out alot too and he loves to go int he car he never sleeps in the car, those big brown eyes are always open while riding.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
Michael whises you tell you all that his Mom received a beautiful ring this past weekend and by a wonderful Man who asked his mom to marry him..
She said yes and a Sept. 2005 wedding is being planned.
We love Mark and he loves us and Mom is so happy.
My mom deserves to be happy and I love my mom.
She holds me takes real good care of my sister and I and gives us lots of Love.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
I will close for now check out the pics I will have new Birthday ones soon and update them again.
God Bless you all.
Julie

Tuesday, May 11, 2004 7:13 PM CDT

Hello Everyone,
Here we are in to May, After our very long winters here this seems nice. Pie has done well and beleive me when I say he is growing he is getting big, with boad sholders and all.
He and his sister are both here with me tonight. Mommy is sick and we want to keep the little ones free from it if we can.
He loves to come to his nannie and Grampa's any ways so he doesnt mind at all. He does miss his momma though.
We will be going to the symposium this year and are so looking forward to it.
As I write this Pie is on the couch looking all around with those big big brown eyes of his and I say"Nana loves you Pie and he will look to see if he can see me"
He is so amazingly smart and he will look for people and turn his head. We Just love him so much he takes our Breath away.
I am sure those of you that seen him last year at the Symposium will be surprised at how much he has grwn.
He still continues to get P.T. and is due again for More
Botox injections when we get back from N.Y.
On nice days he is enjoying getting out side. He so loves being out side.
We thank God Daily for our little man and take one day at a time... Hoping...... Waiting.... and Wanting a cure or at least some thing to help him.
I have Faith and do so want that Big Miricale.
I do know God is here with us beside us and helping us to
all the wonderful things he provides us with.
I cant wait to see you all next week. May you all have a safe and wonderful trip there.
PS. CHECK OUT THE NEW PICS Julie

Monday, March 15, 2004 9:04 PM CST

Hi All,
I havent updated for a while and wanted to share some new Pictures of out handsome little man Pie.
He is growing and gives us so much joy every day.
Pie is amazing and I cannot begin to tell you how much we love him. He is so smart and he is funny at times he can express his needs and wants.
He has quite a schedule and he does not like it messed with at all.
He wakes up early and Mom gives him his meds and then he wants to be left in his bed with his cd player going and he does not want to get up until 10 am. I am serious and if you get him up before he is ready he lets you know. He can have a temper for sure. So we have learned to do it his way. If you wait till around 10 which is his second round of meds he will let you get him up and bathe him with no problems. He then wants to watch cartoons in his recliner and some times takes a nap.
He absolutley loves to have his little sister around he loves to watch her and he loves it when Mom puts him on her bed with Micki beside him she gently rubs his head and jabbers to him he really loves this.
He really loves to feel things and he trys so hard to interact. His eye movements tell a story for sure.
The Botox injections have helped him alot and he loves his Physical therapy sessions and he is so good for Terri his therapist, and she loves caring for him.
Every day we are thankful to have him and every day we pray we do the right things for him.
We work hard to take the best of care of him and keep him happy and comfortable. Pie never complains and he seems comfortable he does however have days when he just isnt up to par. I think we all have days like this but these little ones go through more than we know.
We cannot wait to get out this spring and take him for walks he loves the out doors and the winters here are so long. Please keep Pie in your Prayers he so needs them and we thank you all so much for thinking of him and keeping him on your Prayer lists.
God Bless,
Julie

Friday, February 6, 2004 6:29 PM CST

Hello Everone,
First I want to thank each and everyone of you who Keep Pie in your heart and most importantly in your Prayers.
This means more than you could know.
Pie does pretty well and I know just who we need to thank for that.
Last week Pie had 4 Botox injections in each of his legs at diffrent points. It was painful for us to watch him get them but just knowing that it could help him was soothing.
His neuroligist gave him the injections he could not believe how tight he was.
Well one week later and here we are Pie is doing great his legs are relaxing alot from what they were!
Before his little knees were touching and you couldnt get in the groin area to wash good and changing a diaper was to say the least painful for him and a challange for whoe ever had diaper duty.
Also he kept his legs hauled right up so his heals were touching his butt. And it was getting so we couldnt pick him up much as it caused him pain from being so stiff.
So lets Pray we have this under control now.
Pie's mommy and sissy are flying home in the morning from North Carolina and we will be glad we miss them so much.
Pie has been a very good boy as ususal this week, he seems to enjoy his time here and Nannie and Grandpa's and we sure love having him around to spoil.
He gets total one on one here and he knows it..lol
We can tell he misses his mom though and I am sure he is going to give her lots of kisses when she gets back.
The second night we had him his feeding tube plugged solid and we had to load him and drive 2 hours to get a new one put in what a fiasco that was! He on the other hand never said one word while they changed it he was a sweetie.
Now another thing his seizure meds do not seem to be helping him like they should so the pediatrician is contacting his neuroligist to consider a 24 eeg to see just what kind of seizures he is having and maybe they can get the meds right?
I am sure we wont hear any thing on that until the first of next week.
I worry so about him and we just want him to be as well as he can. I pray every night that we make the right descisions by him. For we want only the best for him.
God has surely given us alot to be thankful for with these two babies.
I can only Praise him for giving us Pie and Micki and thier cousin Jacob. We do so love them all.
I have added a new picture or two of Pie taken today I wanted you all to be able to see how good his little legs look! It is working Botox ROCKS!!!!!
Please keep Pie in your Prayers, I shall not give up on the Miricle the hope for newborn screening and the hope for a cure for this horrible disease that steals our sweet babies. Little Reagan Moore lost her battle to Krabbes last week and I have fels so sad about it.
One of the families that went to the service in Nebraska said that the Minister said in the sermon. God did not take this child Krabbes did. Wow that really was impressionable. And oh so true. Fly High little Reagan.
Ok I have rattled on here. Sorry my fingers are going like crazy.
God Bless You All.

Friday, January 16, 2004 9:29 PM CST

Hello Everyone,
It has sure been cold here in Northeren Maine.
Pie has been staying in and waiting for much better weather to go out.
Right now he needs a hair cut in the worst way, I guess we are going to have to see if Miss Karen his barber can come to his house in town. She always comes here but he is not able to get here right now so we must call and beg her, although she loves Pie so I dont think we will have to beg to much:)
Pie is having a huge problem with stiffness. His legs are all contracted and tight and at this point almost impossible to straighten.
It is painful for him to be moved around.
His Momma and I are working on getting him to his neuroligist to see if we can get him Botox injections.
It has gotten to the point where changing him or picking up causes him alot of discomfort.
Now it is time to get them to do some thing to help this little man. And so Keely and I will push till some thing gets done and fast.
Michael is good as ever he gets moved around from recliner to moms bed and to the couch in the run of a day.Just to change his scenery and give him diffrent things to see.
He is always lisiting to his music or stories on his cd player. We try very hard to make his little world as nice as we can.
His mom got him a spin brush that is a fire engine and he loves to have his mouth care with that and gives lots of kisses after.
Pie's great aunt Marie has added him to another church s Prayer list and It is so heartwarming and nice to know that so many are Praying for our Little man.
Marie is so good about keeping every one informed and Praying. Thanks Aunt Re.
Every Night when I go to bed I say my Prayers and I just know he is lisining.
I will never stop hoping for a Miracle and Praying for a cure for this disease.
Pie sure gets around in lots of good ways.
I will keep you all updated as we find out about the Botox injections and hopfully we will find out the first of the week.
Please keep Little Pie in your Prayers and God Bless you all.
Julie

Sunday, December 21, 2003 9:26 AM CST

Hello All,
As I said on Michaela's page I wanted to update before and after Christmas,
Pie is doing good right now beautifula nd precious as ever.
He is the best little guy in the whole world honestly.
We have been shopping for Pie and trying to find him some special things for Christmas I do have to admit it is heartbreaking as we would love to see him beable to enjoy all the toys a 3 year old could want.
I guess that we are just blessed to have our little man and we Thank God for this miracle every day we get up and every night when we go to bed.
We will be going to his house for Christmas and he will be held cuddled and kissed on so much.
Tomorrow Mom & Michaela head to Portland and Pie gets to come to Nannie and Grampa' and get extra love tomorrow.
He sure gets doted on here and we love every minuite of it.
We have had so much taken from us and with the move they had to make he is hardly ever here any more and it breaks our hearts. He now lives 20 miles and we do see him every day but it isnt the same as when he lived down the drive way he was here all the time. Hopefully in the spring this will change and he will be back here where he belongs.
Michael loves to be near his sister and he continues to love his cd collecton. And of course his hot tub!
Please continue to Pray for our little man he is so precious.
We send you all love and Pray that you have a Merry Christmas and Happy new year.
Luv, Julie

Saturday, December 6, 2003 8:42 AM CST

Hello All,
Where do I begin with news of Pie?
He is just so precious that I can not concentrate on one thing that is better than the other with him he amazes me and inspires me so much.
This little guy is the best little guy he never complains and he is so Brave.
Pie still interacts with every one and doesnt miss a single thing.
At present time he is doing pretty good he did have a spell this week where he did not feel well and Keely took him to the Doctors but they didnt find any thing so we do not know exactly what was wrong but he definatly didnt feel good. He does seem to be better now though.
Pie enjoys his music CD'S and being held and kissed well I think he likes that I do it any ways...lol He always loves his Hot Tub as it makes him feel so good and relaxes him so much. He continues to get therapy at home and lets her do what ever she has to do and then he gets to lay on Mom's bed and listed to his cd's. And some times Michaela comes in there to play with him he loves that. He listens to her jabber to him and she runs her fingers through his think hair.
Pie is still Grampa's boy and he cals Grampa several times a day if he should get upset Grampa is the man that calms him right down and he tells Grampa every thing its so sweet to watch him when he talks to Grampa.
Ever day starts with a Prayer and ends with one for our sweet Boy. A miracle a cure or any thing to help him.
Please keep Pie in your Prayers.
God Bless,
Julie

Monday, November 3, 2003 6:59 PM CST

Hello All,
It has been a month so I thought I would get these pages updated.
Pie is doing ok, he is such a good little boy with all he endures on a day to day basis he never complains.
Since my last update Pie has not changed much except to be more precious and Beautiful if that is possible?
We have a nurse that comes once every two weeks now to draw his blood for his phenobarb level, so that is good.
And another neet thing he now has what they called tele med,
which is a machine where the nurse calls and she can see Pie and do all his vital signs and acess him just like she is there in the room. cool huh?
Ok, we did the Hospice consult and nooo way that was not for us it was very upsetting and not our cup of tea at all.
We told them we did not want thier service.
I cant belive the way they work. Pie will never have a D.N.R. we have told the Doc this all along we will make that decision when and if the time comes.
It was a terrible experience and we closed the door on that idea forever. The nurse that came even suggested that maybe Keely is in denial of what may happen, and this upset Keely and I so much, how dare she and I told her too!
I simply told her Keely and the rest of us are well informed and have been since diagnosis about what will happen and no one knows that better than us.
Nope I didnt like the whole Hospice concept it was like this they dont want to do any thing to help him, they didnt want him to have any emergent care and no ambulance etc if needed.
They dont want you to do any thing to help him live.
You see we have hope and it is all we have, we are never going to give up on our little man, we are going to do any thing to keep him going and comfortable as long as we can.
He will have any thing he needs that can help him.

I just hate this disease and what it does to our babies.
All and all Pie does well, His seizures seem to be under control for the most part and the Phenobarb works well.
So after telling you all this I have to say that things are working out well now.
Pie continues to be alert about his surrondings and loves to be held cuddled and kissed alot. and believe me we deliver.
I guess I have rambled on long enough here. Please keep little Pie in your Prayers he so needs them.
Julie

Sunday, October 5, 2003 12:22 AM CDT

Hello All,
I wanted to update you all again. Pie turned three on Wendsday last week. We opted to have his party on Thursday night and I have posted soem pictures for you all to see.
Wendsday his birthday Grampa and I kept the children while keely was running some errands and our little man had a terrible seizure and we had to call his Doctors.
His seizures have worsened and are lasting 7 minuites it is the most terrible thing to see him suffer through.
The Doctors have increased his Phenobarbitol and are considering adding another seizure med.
Poor little Pie he is so sweet it makes me so sad as no child should have to go through what these babies must endure daily.
Now with the added dose of phenobarbitol he sleeps a good part of the day. However when he is awake he is alert and tries to talk to us.
We kept his party simple as he wasnt up for the stimulation so his cousin Jacob and aunt and uncle came along with nannie and grampa and nannies friend Debi and a special lady Julie Pies new land lady she is sweet and loves the babies, it was nice that she could join us.
Pie had a Bob the builder cake and got many nice gifts.
It was a specail day for sure and it is a blessing to have our little man turn 3. Pie is our spcial little man and he is sweet as ever. I ask you to please keep him in your Prayers he needs lots and lots.
God Bless.
Julie

Monday, September 29, 2003 11:01 PM CDT

Happy Third Birthday,
Our sweet little Pie tuns Three today.
Today will be filled with so many emotions as our Precious turns three.
We are so Blessed to have had these three years with Pie.
Through the power of Prayers and our Heavenly father we have been given precious time.
When Michael was 7 monthes we were given the diagnosis that would forever change our lives.
Unable to have a transplant we sought so desperatly any help and any Miracle to be had.
This little boy through the tears and through the heartache has managed to give us so much.
We will never be the same as before that day.
As I set here and write this many things come to mind, today as I sat talking to Pie he tried so desperatly to talk back his mouth would fly open and as ususal no sound, but some where in there he is trying to tell us some thing.
On this Third birthday, I want to hold him closer and love him more if that is possible? We continue to Pray and ask God to continue giving us this miracle.
Our little cuddle bug kissie Pie, will have a nice party with family and friends and complete with cake.
It is however heartbreaking to go shopping for a Three year old that has tons of toys that collect dust on a huge book case in his room. Complete with every thing a Three year old would love. How I wish we could buy him ride on toys and hear him call us by name and tell us what he wants. I would give any thing to see him eat some of his brithday cake, run around and play.
Pie has grown and now lives 15 minuites from his Grampa and nannie but we go out every day, some times twice a day.
This summer has been a very difficult one here and many extra stresses that we didnt need but got any ways.
Pie continues to get P.T. and enjoys his Hot tub and just adores his sister Miki, who by the way wants her big brother right with her all the time.
At this time Pie is Blind and has frequent seizures, they are probably going to adjust his seizure meds this week.
Through all the crap he continues to amaze us he is so alert and he knows how every one is. His Grampa is his hero he just loves Grampa, and does not like his Grampa to be far.
We constantly talk to him and tell him every thing we are going to do before we do it. He also enjoys lisitng to his C'D's. and cartoons.
So On this special Day I ask you all to keelp Micheal in your Prayers.
I am going to keep praying for a Miracle. I know I know, we have been given one as he is turning 3 today.
We Love you sweetie Pie more and more.
God Bless,
Julie

Tuesday, September 9, 2003 10:50 PM CDT

Hello All,

I thought it was time to come and update Pies page.
Pie is sweet as ever and we Love him so much.
Michael had a neurology appointment in August and we once again were not told very good news.
This disease Krabbe has robbed our little man of so much and also all of us of the joys of childhood with Pie.
However we are grateful that we have him in our lives for he has made us better people.
Michael continues to have the Physical therapy and he seems to be alert. However I hate to share with you that he is completly blind and at best the Dr. says he may see shadows out of his left eye.
Michael suffers from severe tone he is very tight in all extremities and his neuroligist says it is the Krabbes and we can only increase his Baclofen cautiously as it cause him respiratory distress.
His secreations were awful so we just got the Dr to give us Robinal to help with that and he is also on Phenobarbitol for the increase in seizure activitiy.
Micheal goes to bed now with oxygen and a sat machine hooked up to him.
We have had so much to deal with and yet it doesnt compare to what he deals with daily.
And still he never complains! Michael needs lots of Prayers Please.
Michael is a very Brave little man, and we are so very proud of him.
Thank you all for stopping by his page and offering support that is so needed for Keely Pie and Michaela.
God Bless.

Sunday, August 10, 2003 10:50 PM CDT

Hello All,
Thanks for comming to Pie's little journal.
He has an appointment next Monday to see his neuroligist and there they will do an EEG. they have not done one since he was diagnosed and with the increase in the seizures they need to do one.
I do so hate to see the little guy have to go through any thing more that he has to inhis daily life but it is needed.
The ride will be hard on him as it takes over 3 hours to get there and he has an afternoon appointment.
Also the Doctor will be evaulating his meds. It seems as though his Baclofen is not doing what it should its like he is immune to it now.
Pie is very spastic and his legs are very stiff dispite all the Physical therapy.
The last few days he has been very full again we feel it is due to the weather and use of the air conditoners.
So once again he is taking Benadryl to help dry it up and 2 breathing treatments a day until it clears up.
Pie is so sweet, and he just amazes me with his strength and in spite of all he goes through he never compalins.
He is so Beautiful. He loves to be around his sister she entertains him so much he will just watch her.
Another thing Pie does that is cute is, he will be sitting in his swing watching his cartoons and when he wants me he will turn his head and stare out the side and back of it until I go over and talk to him or Pick him up as I do most of the time:).
Pie lets us know what he wants and is easy to read. He some times tells little stories and tells us things with his eyes for sure.
You should have seen him when his Mother got home from N.C with his sister last week he was so happy to see her and his whole face just glowed. and then he did this little whiney type talk like he was giving her heck for being gone it was so special.
I will post again after he sees the neuroligist on Monday.
Please keep him in your Prayers he so needs them.
God Bless you all. Julie

Friday, August 1, 2003 9:26 PM CDT

Hello All,
As most all of you know Keely and Micki have been away this week.
Well Nannie and Grampa have had the pleasure of having our Pie with us all week. Grampa took a whole week off to stay with Pie while I worked all week 3-11pm.
Grampa took wonderful care of him as ususal and Pie is always so good.
However he misses his Mom and she called him at least twice a day if not more and every time she talked to him those eyes would get so big ane he would start to smile.
It was precious to see.
Some of you may have seen my post on the board but we are worried about Pie haveing increased seizures. It is so very hard to watch him go through this Painful is the word.
Michael does so well in other ways he is still very bright and is awake most all day and loves to watch T.V and listen to tapes.
If we could get these seizures under control and also his increased tone we would feel better, and so would he.
I cant wait till he gets to go to the neuroligist this month I just hate going to that office as that is where we got the worst news of our lives and every time I go there the whole day goes through my mind.
Michael is anxious I just know it for his Mom and baby sister to get home. He loves to get down on the floor and play with her she is so entertaining for him.
Well I will close now. Please Please Pray for our little man. He needs extra Prayers right now.
God Bless you all.
Julie

Monday, July 14, 2003 0:12 AM CDT

Hello All,
As I said on Micki's page first and foremost Thank you all of you for your thoughts Prayers e mails and phone calls.
Thank you Kelly for helping reschedule the trip for the time being.
I havent updated in a while so lets catch up on how Pie is he had an ear infection, and a cold 3 weeks ago and had to be on an antibiotic. He also had to have nebulizer treatments to help.
He was so full and he still has a good cough but it was still hard on him to get rid of all the ucky stuff down there so it was constant suctioning and giving him lots of extra attention to help him through this.
Well he seems to be feeling better and the suctioning so much is over.
Michael's Docs are in touch and feel they will have to so some thing diffrent for his stiffness. That is a touchy situation as we want him comfortable but not out of it?
So we will have to wait to see what the outcome on that will be, we should know soon.
Michael is so brave and so good he just amazes me we wouldnt have know he had an eear infection but he got a fever and we took him right in, it sure wasnt because he was complaining.
We all took turns helping Keely to keep up with every thing.
Keely well I just Love the care she gives my grandchildren she works now too part time she is a child intervention specialist. she now works with children with disabilties such as CP.Autisim and other disabilties. She loves her job and needs to get out some so we are happy for her.
Keely loves children and this job fits her well.
Please keep this little family in your Prayers and all of our families.
God Bless,
Julie

Thursday, June 19, 2003 10:04 PM CDT

Hello All,
Well I am getting these pages done tonight before I go to bed or eles it may take me a few more days to get to them.
Micheal as you all know had to go on Home oxygen for night time use only after we returned from the Symposium.
Pie is tolerating that fine and he sleeps and breathes so much better.
Pie had been doing fine and we are ever so thankful to God for that.
He is so smart it is amazing I do so wish he wastn trapped in that little body.
Some days I have bad days and I look at him and I want so badly to see him run and play and most of all talk to us.
Feelings overcome me and tears fall.
But we Love him any way he is and he has sure given us so much.
Michael seems to be comfortable he never complains and the only thing we want to discuss with the Doctor is that he is still so stiff even after taking his baclofen every 6 hours.
They did increase it back in may but the decreased it after he seemed to have some apenic spells and weird breating patterns.
We really feel he needs help with this rigidness.
He ususally does well with therapy and his therapist gives him quite a work out and strethes him every where even doing it some times in the hot tub.
He sure loves getting in the hot tub and that does relax him for a while.
I keep Praying for a Miracle for our little man.
Iam researching for some kind of help for him. we have been waiting for over a year for a special transplant that was suppose to be F.D.A approved possibly by last fall.
It has not been approved yet.
As bad as I hate to say and I do really, I think we were being led along some and given false hope which has been pretty painful as this gave us such hope thinking some thing was in the works that may help our Pie.
Iam not giving up! and Keely will be taking this up with the appropriate People as to what is going on and why we were told one thing and then it was some what being denied.
Only God and we know what was said to us and we never said more than what was said to us word for word. Why would any family want to any ways?
Iam still going to remain hopeful that this will happen for Pie and ALL of our sweet Krabbe babies they so deserve it. We all need to keep Praying for a cure and definatly for New Born screening tests to save these babies.
Pie is so sweet and so loved. Please keep him close in Prayers.
Also good news Noah Prichard has made it out of PICU and back to the transplant floor. He has also been extubated and seems to be doing so much better at this time. Thanks and Glory be to God. Please keep him close in Prayers as he isnt out of the forest yet but we are hopeful.
Degan Miles is going towards his transplant journey and we need to pray for this little cutie.
God Bless.
Julie

Sunday, June 1, 2003 8:45 PM CDT

Hello Everone,
It has been a month.... well almost since I updated.
Where has time gone?
Since our last post we had a wonderful trip to Ellicottville, N.Y to attend the sixth annual Hunters Hope symposium.
We all had such a wonderful time meeting every one and Pie sure loved all the attention he received there.
And believe me he got lots of Love there.
Pie was such a good boy through out the entire trip.
He just never ceases to amaze us he never complained about all the hub bub at that airports or any where else.
He was so alert at the Symposium and seemed to be listining to everone as the talked and even turned his head as if he was taking every thing in, and Iam sure he was. Pie and his sister even walked for the Laps for Life Jenn Camarata carried Pie clear around the Track:)
He was such a trooper.
Sandy Windly Angel Logans Mom sang to him, told him stories of Pirates and such and Terri and Reb held him and kissed on him:) He met so many wonderful women there it was hard to hold on to him.Angel Ava's mom was there too and she also gave me attention.
Angel Edens mom and Dad took the trip with us and Ron was a tremendous help loading and unloading Pie when we needed help.
Everyone one we met was so awsome and so helpful it was such a wonderful experience and Iam so glad we all got to go.
So for new News with Pie. We found out just before leaving that Pie would have to go on oxygen when we returned from N.Y at night only due to some apenic episodes in the night.
This was quite upsetting for all of us to deal with.
However we must do what is right for our sweet little Pie.
Other wise Pie is doing good and we keep Praying he will continue to do ok.
I have posted a couple of new Pictures for all to see.

Please keep Michael and Michaela in your Prayers.

A special request for Noah Pricard who is so brave in his fight with Krabbe he needs lots of Extra Prayers as he battles with complications.
Luv, to All
Julie

Tuesday, May 6, 2003 12:09 AM CDT

Hello All,
Thought I would take a moment to update the childrens pages today.
We are finnaly getting spring like weather here in Maine and Pie is liking that he just loves the outdoors.
Pie is so looking forward to the symposium, I know because we have discussed it and he trys to talk every time.
Pie is such an amazing little man he really is.
I cant believe this but he is cutting his two year molars pool little guy. He never compalins though. He has two top teeth and no is trying to get his molars.

We were all so saddened to hear of Angel Makayla Pike's passing this is never easy and although we never get to meet some of the children we are all connected and we Love them all. My thoughts and Prayers go to this family who has been through so much.

Pie is still waking giving lots of smiles every morning and we just love it. He has to be the most photographed kid around!
He was in his car seat the other day and I couldnt help but notice how big he is getting"tall" he looks so grown up now. He had a hair cut last week just in time for the Symposium. He loves having his hair cut. He sits right up on momma's lap and doesnt say one word it is cute too see.
This little man is so handsome and brave we all love him so much and there for we arent giving up on a Miracle for him and all the Krabbe babies. I do so wish this newborn screening would happen and I know it will we have so many working on it so lets all keep Praying.
I have to close now gotta go to work. I probably wont update again until after the symposium. Only 8 more days and we all get to go.
Please keep Michael "Pie" in your Prayers.
Julie

Tuesday, April 22, 2003 9:10 AM CDT

Hello All,
Hope you all had a nice Easter?
We had a wonderful one and Pie really enjoyed his easter basket. As we would take things out and show him he would open his mouth and try to say something.
He was very alert and playful on Easter.
Pie continues to amaze us all. He smiles alot now, we are not sure what has brought them back however we are so happy about it.
It is always in the morning that he does it and he can even hold them there for a few seconds it is so adorable to see and such a blessing.
I go down every morning with camera in hand just to get them and he delivers them every morning.
Pie is such a Grampa's boy I sure wish you could see him with his Grampa. He has such a little personality even Tina his Physical therapist was saying that to me just the other day. He can make all his needs and wants known he is so smart and he is always so good.
He continus to wear his leg braces for two hours every day and has therapy 3 days a week. Tina really ranges him good and he gets in the hot tub daily and his stander.
Sometimes he doesnt want to be in the stander but he is really good about it he will just wine a little oh yeah and pucker if he sees some one walking by.
He is a typical two year old in that sense he knows just what to do.
Pie has also been making some noises he has never been able to make sounds and it seems as though he is learning to do that now? We feel it may be do to lisitning to his VERY VOCAL SISTER??? because some of the sounds he makes are like hers.
Pie and all of us are so looking forward to the Symposium we will be so happy to meet every one and see every one.
Iam also wanting to hear what the Doctors and researchers have to say. It will be so good for us to go.
I will close for now but Please keep Pie in your Prayers.
Also I have a special request, Please Pray for little Noah Prichard he is at Duke and has had alot of complications he has been very brave and we Love him. He needs lots of Prayers. Thank you all.
Julie

Tuesday, April 8, 2003 6:07 AM CDT

Hi All,
Pie is doing well and you wont believe this but he is actually doing more these days.
Pie has always been very smart and always tries hard to do things. He has been smiling more and more and I cant begin to tell you how ver special this is as he lost that ability very soon on in with this disease."check out the photos today."
Pie is also making noises now too. every time he yawns he makes a long noise to go with the long yawns he has and also he has copied a couple of his sisters noises.
Now if you knew Pie you would know he has never made any noises so this is so cool to hear him.
He also still moves his head from side to side to look at what ever he wants too he is very alert and doesnt sleep much during the day, maybe a cat nap here and there but that is it.
Last Wendsday we took Pie to his neuroligist in Portland and he was very impressesd with Michael and how he is doing he smiled constantly at him and it was a very good visit. Pie has never had to have an increase in his meds since diagnosis 2 years ago. However he did increase his Baclofen which is for stifness, but he did say he was on a very small dose of that. Michael never complains and he just amazes us so much. Oh and his mom and dad bought him a new solar system for up over his bed it is black light effected and it is so awsome to see.
Now when he wakes up in the night he has more to look at.
If you ever seen his room andy 2 year old would love to have it. He has so many nice things in there all visual things. I have to get a photo posted here of his room. I will try to do that soon so you can all see it.
Please keep Pie and his sister in your Prayers.
Also Pray for little Noah Pricard who has had quite a time going through transplant. And of course all out other beautiful Krabbe babies and thier families.

Sunday, March 23, 2003 2:06 PM CST

Hello Friends & Family!
I havent updated in a while and thought today a good day to do the pages.
We are finnaly getting some spring weather here in Northren Maine and it feels soo good.
Pie is enjoying getting out a bit more and as always he just loves to go for rides and he loves wal mart:)
Pie has been smiling more latley something that is so nice to see we just love those smiles I have posted some new pictures where you can see him we kept trying to get one of the big ones but we were not successful just yet.
Pie spends his days getting lots and lots of Love and attention. He loves to watch tv, and he enjoys being read too and talked too. Oh and I musnt forget you tell you all that he had a ride on Grampa's skid steer and he just loved it! we got it all on video tape it was a special time for Pie and his Grampa.
I have also posted a picture of Pie in his stander he has days where he loves it and others he wants some one to rescue him. It just so happened that the other day he didnt not want to be in it so when nannie arrived there his therapist and mom were in the kitchen and the minuite he heard me he started pouting and whining as if to say Nannie you will come get me right??? well nannie talked to him and then placed the stander in front of the tv and he continued to stay in it he was in it a total of a half hour and that is good for him especially where he has to wear his braces too.
Iam so proud of Pie he contunues to amaze us and he is always a good boy, and I just have to add HANDSOME TOO.
He is growing and we are going to have to go shopping as he has out grown some of his clothes. He is getting taller his weight remains the same. We are all still praying for our Miracle for little Pie who is so smart and with it.
Please keep him in your Prayers. God Bless you all.
Julie

Tuesday, March 11, 2003 9:48 AM CST

Hi All,
Iam so sorry it has taken me so long to update.
We have all had that stomach and intestinal flu.
Pie and his sister had it very badly. And it just didnt want to go away! Poor little Pie he is so good and he was unable to tolerate his formula so he had pedialite alot of the time. Then we started the formula and lowered the volume he got per hour, we slowley increase it he is still unable to tolerate it on 35 as he had been so he is now being worked up slowly. It has been a rough go of it.
Of couse we have to worry with Pie about asperation pneumonia.
Well I do think Pie is feeling better and he is back to having therapy this week so that is a good thing as he was getting stiff again.
I feel so bad when the babies are sick as they already have so much to deal with stuff that we dont even know about Iam sure.
Pie was so funny yesterday you all know he is a Grampa's boy, well Grampa stopped by quickly on his way some where else and pie started to fuss as he always does when he sees Phil, Phil at that time didnt have time to pick him up so he told Pie he would be back soon and hold him....
Well about an hour later when phil stopped back in. Pie was mad at him...YEP wouldnt even look at Grampa and Phil tried so hard to talk to him and Pie would look away and ignore hin. Pie is so smart he really is and he was letting his grampa know he was upset with him.
Phil was crushed and even called me at work to tell me Pie was mad at him. Iam sure Pie will be fine the next time he sees his Grampa as he loves him so much.
Pie got a new book shelf for his room and he has all his collectables on it and he has alot of cool toys there.
I have to post a picture soon of his room its really awsome any two year old would love it.
Pie is so waiting for good weather so he can go outside for walks in his kid kart or his Red Wagon. He loves the out doors and it has been such a long cold snowey winter here in Maine. He really needs the fresh air.
Pie is really amazing and from time to time we do see smiles usually first thing in the morning and they are full smiles and we do so love to see them. Please keep Little Pie in your Prayers.
Luv, Julie

Friday, February 28, 2003 6:18 AM CST

Hi Everone,
I have been trying to get the pages updated, Yesterday I got Michalelas done and today, I wanted to be sure to get Pie's done.
I have to tell you all about a wonderful event that was held for the kids.
In December one of our News papaers here did an article on the kids story this is the second one they have done.
Well a gentleman called Kris right away and was so concerned after reading it that he wanted to help.
He went above and beyond all and held a fundraiser in Northren Maine.
All of the little Calaman family went up north to a place they have never been and met so many wonderful people that have touched all of our lives.
You know as we live in this time where War is looming and things are uncertain, we some times wonder if people really care about one another. Well from the time Michael"Pie" was diagnosed we have seen that people do care we have a wonderful family and lots of support and we have a Beautiful Krabbe family and we have a wonderful new family in Northren Me. I could cry just reading the e mails we have recived and the out pouring of Love and caring from this community.
You know our little Angels have taught us so very much.
It proves to me they were sent here from Heaven above. to show us Love and teach us how to live.
I just love my granchildren so much. I Love all our precious Krabbe babies. I too know that the ones that have gone back to the Heavens look down and guide us all to Love and teach others about awareness so maybe some day we will have a cure for this terrible disease called Krabbe.
Pie is doing good and he really enjoyed going to the event in Northren Me last Sat. It was good for him to get out as we have been keeping him in alot this winter due to the weahter being so cold here. He does so love to get out and he is so aware of things. Pie is just amazing!
He got his new leg braces and doesnt seem to mind them too much. His therapist told me the other day that he is doing so good with his therapy and she can see wonderful progress with his muscles and movement. Thank God for that too! well I have to get going but will update soon with some new Pictures. Please keep Pie in your Prayers.
God Bless.
Julie

Sunday, February 23, 2003 7:39 AM CST

Hi Everone,
Iam sorry I havent updated for a while. We have just been so busy with working and the childrens therapies that I hadnt had the time to get online.
Phil and I had the children for a few hours the other night so Mom and Dad could go out and eat and just have some quality time.
From the moment the kids arrived Pie had the happiest look on his face hejust loves to come to nannie and grampas, you can really tell he does.
Well I got lots of kisses he just kept giving them out and we played and ofcourse nannie loves to give them thier baths so we did that. That is one of Pie's favorite things to do and he gets a full body massage after he just loves it. And lets not forget his mouth care he enjoys that so much, and will always give kisses after that for sure.
Well on Thursday Pie got his new orthotics,"leg braces"
This will help alot as he is getting some contracture.
Also he goes back to the same lady this week to have a special pair of shoes made to wear with the braces.
He was such a good boy through out the whole ordeal.
Pie still continues to try to talk and he is so amazing he turns his head to look at who ever he wants to.
We continue to pray for a Miracle and a cure for all these precious little Krabbe Babies.
I Pray that some where in some lab wakes up one day and says"hey I have it I have found a cure" It could happen and Iam not giving up hope. I pray also for new born screening that will save new lives from this terrible disease. Please keep the babies in your Prayers and Thanks for stopping by.

Thursday, February 13, 2003 9:16 PM CST

Hello All,
Thanks to all of you that come and sign Pie's book you dont know what it means. Some times I get discouraged because I dont think he gets much traffic.
I really like the adoption idea.
Thank you Mary, and all of you who are new to read our sweeties page.
We all need to know we have support and when I come and see some one has signed the guestbook I know they care and took time out of thier busy lifes and cared enough to check in.
Michael is such a wonderful special little man.
We love him more than any words could say. He has such a little personality and continues to make his needs known to us. He loves to be held up close and he loves to play tickle, he loves books and most of all music.
Special times with Grampa are the best:)
Today he talked to his Mom on the phone and started to cry he does miss his mom and sissy.
Today we were suppose to go get his new leg braces but they cancelled the appointment because they hadnt come in yet so he will have to go next week.
The weather is extremly cold here in Maine this week right now with the wind it is -40 BRRRRR, so our little Pie is staying in until it warms up some.
We keep Praying for a Miracle and thanking God for being so good to us.
Michael will be staying here with us on Sat. when his dad goes to get his mom& sister from the plane.
He loves to stay at nannies and grampas and we love to have him to take care of. But we know when his Mom gets home she is going to hog all the lovin from him she can get. I will close for now and update soon.
God Bless you one and All. Please keep him in your Prayers.
Julie

Thursday, February 13, 2003 9:16 PM CST

Sunday, February 9, 2003 10:46 AM CST

Hi Everone,
I am really wishing winter in Maine would be over with!
However we have a ways to go yet.
Pie had to go to Bangor on Friday to have his feeding tube replaced. This is something that needs to be done from time to time usually every 3 monthes or so as the baloon tends to go bad.
Poor little Pie this procedure is not easy on him they do not give any sedation and they take the old one out and place a new one.
So needless to say he is sore after. His mom went in with hime and Micki and I sat out in the waiting area. Pie was such a Big Brave Boy. Iam so proud of him as he has so much to endure. He was so good as always and we kept giving him Ibuprfen to help with the discomfort.
He then came home to stay with Nannie and Grampa while His Mom, Dad and sister left for Portland, Mommy had to catch the plane that would take them to Durham for Mici's one year post transplant testing and evaulations."Please Pray all goes well for Micki while there."
Pie spent the night with us and had severe reflux in the night, due to the procedure he had done.
Yesterday he was terribly full of Phlem and I had to suction him every few minuites all day and he also coughed alot. I was so concerned all day. When Kris got back home I told him. I did call the Peditrician who said this would be normal after having that done and It should go away slowly in the next 24 hrs.
Today it doesnt seem as bad but still has some comming up and we are still suctioning him some I dont think it is as bad but we will be watching him.
I get so stressed any time any thing is the least bit wroing with our little man.
Today he will be comming up at supper time and his grampa will be here and hopefully his cousin Jacob will come to visit. Jacob is growing and he is so funny, he is now goin on 6 monthes old aready!
Pie is missing his mom and sister already but Dad is giving him lots of attention.
As I close this post I has for special Prayres for Pie, that he gets over this phlem and cough, I just hope its not a cold again or some thing like that.
God Bless you all.
Julie

Sunday, February 2, 2003 5:16 PM CST

Hi All,
SNOW SNOW AND MORE SNOW!
It is very stormy here in Northren Me. We have all been staying right in as the roads are bad.
I thought it was a good time to update.
Pie is doing well, he got a new toy the other day a Bob the Builder doll and when you press his tummy he says....
Can we fix it?? yes we can!
Pie loves it and stares it.
We try so hard to make Pies world a happy one we sing and play and do lots of silly things, He seems so aware and seems to know what we are saying.
Pie went the other day to be fit for his new leg braces, he goes back in two weeks to get them. His mom will be North Carolia so nannie will take him.
He will be spending lots of time with his nannie and Grampa. We know he wont mind he loves to come to our house.
Pie continues to get therepy 3 times a week and he doesnt mind it too bad ofcourse some days are better than others.
He definatly likes to have his range of motion done in the hot tub.
Latley Pie has been trying so very hard to talk he opens his mouth and makes all the motions but no sounds come out I just wish that he could. We wonder what he is trying to say? If you ask him a question like "where is Gramp? or did you go see Grampa or any thing like that he always tries to answer.
Another amazing thing is he always smiles "normal smiles" in the morning and has done this to me on several occasions.
It sure makes me happy to see them. We dont know why but that is the only time he can do it is in the morning?
Pie is so loveable he loves to cuddle right up close and he ususally just looks at you with those big brown eyes.
You can tell he just loves to be talked too and held.
He never complains he is so good.
Pie can still turn his head to look at you and moves his arms alot like he tries to reach up and get you.
His hearing is so good because he follows sounds and voices.
He has done well and we are so very thankful for that and Pray for that to continue.
I ask you all to Pray for him along with all our other precious Krabbe children. Also Pray for the families who have recently lost a sweet one. We know they are angels in heaven but will be so missed here. These little ones are so Brave and I wish I could hold and hug every little one.
I will up date again soon. Thanks for stopping in and writing in the guest book. Dont forget to check out the new Pictures.
Julie

Sunday, January 26, 2003 at 08:09 PM (CST)

Hello everyone.
I know I told you all on Micki's page but we had a wonderful weekend.
Pie is doing good and he had a great weekend we visited with miss Kelly and Tiffany and Ron Angel Edens parents.
We all met at my moms to save every one too much travelling.
Pie seemed to enjoy all the company and attention, as usual he was a perfect little man.
He was fussing onece and Tiffany came over and you know it was so strange but as if he knew that she was an Angel mom that he calmed right down with her soothing voice and she was running her fingers through his beautiful hair.
I really think they know a whole lot more than we think they know.
I wish we all got to see each other more but we all live in so many directions.
There is the symposium comming up in May though.
Thank you all for comming to the childrens sites and signing them It sure makes my day.
Before i should forget I wanted to tell you that Pie's therapist told us that Pie needs ankle braces now and they are moving a head with plans to get them.
We will have to take him down state to get them made.
My poor sweet Pie there isnt a day go by that i dont Pray for a miracle. He is so sweet and so very smart, when he looks at us with those huge brown eyes I just melt.
I hug him and hold him tight and Pray with all my might that a cure is on the way. These little angels mean so much to me I wish I could hug them all every one!
Well I guess I will close for now and update again soon.
Again thank you all for stopping to check in.
God Bless you all.
Julie

Tuesday, January 21, 2003 at 06:57 AM (CST)

Hello All,
Pie seems to be getting over his cold. He still has a little cough but other wise is well.
You wouldnt believe how much he looks like a little man now!
No more baby look. He has the most beautiful hair and complexion.
Pie is so smart and he shows us every day with his own ways of expressing his self.
He spends his days surrounded in lots of love and attention.
He has so many tahings he enjoys. He loves his Hot tub and the other day nannie even got in! Yes keely called me to come down and help her so both babies could het in at the same time. It was alot of fun I held Pie and she held Micki and you wont believe this but Pie kept looking at me and I swear he was thinking" silly nannie you have never been in here before"!!! that is the look he had on his face and he kept looking at me.
Pie has a new stander and he also likes getting in there he feels like such a big guy in there and it is so amazing to see him in a standing position.
We play with all of his toys with him and show him what they all do he loves doing that too.
Pie has always loved music so when he comes to nannie and Grampas we play his silly songs and the other day......
pie had his mouth going as if he was singing them I really belive he was trying too. He tries continuosly to talk if you ask him some thing his mouth will open and he tries so hard to make sounds but is unable too.
I wonder just what he would like to say. He really gets going for his Grampa and he is a Grampa's boy 100 percent.
Pie is so good I know Iam alway saying that but he is he hardly ever sleeps during the days some times just a cat nap after meds, other than that he is bright eyed and ready to play. He doesnt miss anything.
Michael still turns his head to look at us and follows us pretty good.
I just keep hoping and Praying for a Miricle.
I have added some new pictures here also.
I ask that you continue to keep Pie and his sister in your Prayers.
Julie

Tuesday, December 31, 2002 at 11:04 AM (CST)

Hello Family,
Pie had a wonderful Chritmas and I want you all to know he seemed to know it was Christmas! He spent the night with Nannie and Grampa slept nice and cuddley in between us and had a great night.
His Mom, Dad and sissy came up early in the morning, with Pie in his grampa's lap we all began opening gifts he was in awe his grampa would show him his gifts and talk about them. Pie had the biggest eyes and would open his mouth and rry to talk as he does so often but nothing comes out.
We just knew he was enjoying it so much it was great.
He got all kinds of things for his room and new clothes and he even got a shaving kit so he could shave with his grampa.
On Friday morning we noticed that Pie seemed to be getting a cold and we took him straight to the Dr's and yes much to our dismay this little man has gotten a bad cold and we are not sure from where as none of us had been sick?
Pie has never had a cold and we were so hoping we could get by another winter with out one.
Of course you all know that is so hard on these babies.
The Dr all so said he had a double ear infection not a real bad one but they were both red so she put him on an antibiotic.
Poor little man hasnt had a good weekend and first of the week at all. He is still coughing some and sounds like its all loose in there.
Please keep him in your Prayers he so needs them. Pie is still doing his therapy and enjoyying his stander.
He still continues to amaze us with his ways of expressing him self. He knows he his loved and he loves back Pie is so very special. Hope you all have a wonderful new year and God Bless you all.
Julie

Tuesday, December 10, 2002 at 09:42 PM (CST)

Hi All,
I finally have my computer up and running again.
I was missing updating the kids pages and keeping in touch on the message board.
Pie was so glad to see his mom and have her back home again.
He was staying up to nannies most nites because his dad had to be to work early in the morning and rather than take him in and out early we just kept him.
As you can imagine we didnt mind that a bit.
When Pie spends the night with Nannie and Grampa he sleeps right in between us and he is such a good boy.
He watches his grampa like a hawk even in bed he stares at him and just loves all the attention. This is one little boy who never ever has to worry about Love and attention.
While his mom was away he continued to get therapy here and did really well too! He gets on the therapy ball and he loves it. I feel it is very benificial to him also.
Pie is so precious and we Love him so very much, we are working hard at keeping him as healthy as we can. Pie and Grampa decorated the christmas tree together the night before his sister came home we wanted it done so she could see it. We sat Pie in his kid cart placed an elf hat on his head and Grampa even put the lights in his hand. When the tree was all lit up he watched the lights and he was just so alert! We will forever treasure that moment. His grampa went and bought him another recliner chair so he would have one here, during the day he loves to move around he goes from recliner to kid cart to our laps and does diffrent things through out the day. He loves music and always has so he loves listining to his childrens tapes. He loves T.V and we just try to keep his mind busy.
Pie was given a stander a while back and it is a very nice one but I guess it wasnt right for him so they wanted him to have a new one. Well it came yesterday and wow.. it is really nice and Pie loves it. I saw him in it for the first time today and I wanted to cry to see him in a standing position was so wonderful. I will post pictures soon of him in it. He has most of his therapy in his hot tub now and it is so much easier on him, his therapist gets right in with him. The older Pie gets he seems to make his needs and wants known he is so smart.
He as I have said before is so good and he continues to amaze us all. I have my moments when I want to cry and cry and then I have to talk to my self and Pray for we must be thankful for what we have, but the otherday at Micki's party he sat in his recliner beside her and was so alert and looking around and listening to evey one and we kept going to him and talking to him, a Part of me dies every time because he should be up running around like my neices little girl was,"they are the same age" he should have had cake he should have been playing too.
I look at Micki and wish so bad that we could have seen him doing the things she is doing too. This is the biggest heartache."Krabbes" I wish we all had never heard that word. I wish we and all the other familes never had to feel the pain and devestation it causes. I keep praying for a miracle Praying for this and Praying for that our Lord must get tired of carrying my load. We are so Thankful to him for Pie and I wont give up. I wish this Mesenchymal transplant would hurry up and happen. Gene therapy or some thing.????????
Pie tries even harder to talk he opens his mouth wide and he sometimes gets a little noise out, I wish I knew what he was trying to say? He still moves good and he turns his head to look at you and watch you.I must be happy for all we do have and Iam, I guess some times it just really hits me hard. Thank you all for being here and being part of all we go through. Please Keep Pie in your Prayers with all the other sweet little ones we love.
Julie

Friday, November 08, 2002 at 06:51 PM (CST)

Hi All,
Iam updating the pages tonight as they were behing a bit.
Pie is doing good and he still continues to have therepy 3 times a week.
Some times he gets in the hot tub to have it and other times he has it on the mat. His therapist says she is seeing his trunk improve alot, his sholders are very stiff and he hates to have his arms messed with.
He tolerates every thing well though.
Pie is so good any ways that he wouldnt complain.
He went to his favorite Dr last week and she was so impressed with him that she took pictures"well he did have his adorable hunting hat on too" and you wont belive what he weighs now!!!! A whole 17 lbs Pie has never weighed this in his life he weighed 16 lbs when he was diagnosed and went down from there. We are pleased that he is up some.
Also he is so long he looks like such a little man.
Pie is such a Grampa's boy and you wont belive this but Gramp has taught him to stick out his tongue! yep it takes some work for him and lots of concentration but he does it.
He is getting new hand splints to help keep his hands in a more anotomical postion. They had to order some you see they thought they were going to make some until he crushed the mold when they put it in his hand..... so the quickly gave that up.
Keely is very busy with both babies and We all share and help with every thing. I hate to go to work I want to be with them every minuite, they are the Love of my Life I love being a grandmother. I will try to update again soon please check out the new Pictures, I hope to have one soon of Michael and his sister and new cousin Jacob he is a real cutie and growing way to fast. Love to all.
Please keep all the babies in your Prayers. Julie

Thursday, October 17, 2002 at 06:09 PM (CDT)

Hi everyone,

Pie is Two years old!!!! he has grown he has just changed in to this very handsome little man. He doesnt have that baby look any more.
Hi Grampa says he is a big boy now. he got some nice things for his Birthday.
His mom and dad got him a new cd palyer and its even remote controlled. he got clothes and books and new slippers and PJ'S new fire trucks too. And new Movies of course.
He of course loved all his things and he loves having stories read to him.
He is doing good with his therepy and doesnt seem to mind it too much, Pie is just good any ways he really never complains about much.
Pie is all the time making his needs known we can all tell what he wants and when it is really amazing. the other day he stuck his tounge? we dont know where that came from but his sister does it all the time!
Tonight he was crying and I asked him if he wanted to call Grampa and he stopped right up and so I instantly knew that is what he wanted to do.
Pie loves his Hot tub and when the jetsht off he begins to pout and some times he cries, he just doesnt want to get out.
We continue to thank God for every day we have and we live life to the fullest. We do every thing we think Pie would love to do and then some.
He loves to come to nannie and grampa's to play and watch tv. he gets lots of Love every where he goes that is for sure.

This little guy is so awsome and we love him so much!
Please keep him in your prayers as well as all our beautiful Krabbe Babies they need all the prayers we can give them.
Luv Julie

Thursday, September 26, 2002 at 08:24 PM (CDT)

Hi Everyone,
Pie has so much news,
Pie and his family got all moved in to their new home and it is nice. He has a huge bedroom with all his fancy things.
He has his fire engine bed and his fish bubble light and his very own Tv and movies. It is the cutest room and he has every thing in there to keep him comfortable and entertained.
Now the best part of it all is Pie also has his own Hot Tub
it is nice and big and he just Loves it. I could never have imagined that he would love it as much as he does he gets in 2 times a day and more if he wants. and it relaxes him so
much that even after he gets out he just is all loose and will let you do any thing wiht his arms and legs.
Pie has been getting therapy and it is making a big diffrence. Would you believe that his therapist comes to the house he got approved for in home therapy and he has the same therapist as his sister. she comes 3 times a week and they each get one hour of therapy.
Tina gets in the hot tub with Pie and does some of his therapy there with him,as he moves better in the water.
Tomorrow he goes for a hip xray to see what is going on in there we know he has problems which is common with these little ones. He also goes next week to see his neuroligist just for a check up, he hasnt been there for almost a year.
Pie does pretty good considering and we just take one day at at a time.
The big news is Pie Turns 2 on Monday the 30th and we are having a Birthday Party. so stay tuned for how that goes.
Please check out his new pictures. I will try to update again right after his Birthday.
God Bless you all. Julie

Monday, September 02, 2002 at 09:04 PM (CDT)

Hi All,
I wanted to get the kids pages updated tonight, things have been so busy here and as you may have already read on Michaela's page,
Michaela and Pie have a new cousin, Jacob Philip. He was born last Wendsday and weighed 8lbs. We were excited about that.
Pie has been having his therapy and that is going well itis so good for him. He is getting his muscles stretched again, and she even put him on his stomach and he didnt seem to mind at all, he just looked all around.
She was amazed to see how well he could follow the toys.
Pie does good and we keep Hoping and Praying that he will.
He is so smart and so alert most of the time. He gets lots and lots of Love and attention from every one and his little sister is very happy to see him and be near him. He too enjoys watching and hearing her.
He gives out a big sigh if she cries too much though.
Pie has grown so much of course he never gains much weight but he has put on 2 lbs since May and we are glad, a little weight is good for him.
He love the out doors and his favorite place in the world is with Grampa he sits with grampa every night on the sofa it is a ritual here and he falls asleep there in his granpas arms and then we put him to bed.
I have noticed since he has beenback at therapy that he is moving a little more and that is always nice to see.
This little guy makes all his needs know and he responds to questions at times. If we ask him if he needs a tubby bath or if he has wet pants he will make certain sounds that let us know that he knows what we mean. and if he wants to call grampa at work and we say"do you wanna call grampa?" we will some times get this little voice in a crying almost way, say ahuh, ahuh, and if ever he is crying and upset it is grampa that can calm him. Phil sets with him by the hour every evening and more if he can and I will tell you the sky is the limit with Pie he doesnt want for Love or any thing else. We try so hard to take extra good care of him he has so much Love if that could make him better he would be A-OK. I keep Praying for all these sweet little babies with this horrible disease and it kills me to hear of any more being diagniosed.
Pie is very very special and he knows he is loved, and that is the what keeps us going.
His 2 worst problems are bowel movements and Reflux he is going to be seeing a pediatric gastro Dr soon, because he is maxed out on stomach meds and they need to do some thing else. some days are good and other days he has increased reflux?
These days Pie enjoys watching his cartoons Rug Rats and the Nog channel which has all kinds of bright colorful shows on it and lots if music which he loves always.
He is quite a busy little fellow during the day we do all kinds of diffrent things. Nannie and momma take him for a ride int he car every day he loves it.
I have added a new picture for you all. Please keep the babies in your prayers. Thanks for checking in.

Sunday, August 25, 2002 at 09:45 PM (CDT)

Hi All,
Pie is doing good he finally got back in to physical therapy and we are so happy abou that.
He will be going twice a week for now and they may increase.
Pie got a beautiful new hunter green hot tub from, A Special Wish. I hope to have some pictures for you all soon with him enjoying it. Pie loves the therapy it relaxes him so much.
His new home is almost ready Keely and Kris have worked very hard and it is beautiful. Pie has his very own hot tub room and it has cute border and nannie and grampa bought him his own towels with Pooh on them and a rug to match.
They should be ready to move in next week.
Iam going to miss having Pie in my bedroom at night I love getting up with im and being there when he fusses.
Pie is such a good boy too. He is so beautiful and we Love him so much. He is a little boy trapped in his body but believe me when I say he is so very smart. He makes his needs known and we know how to read him he has beautiful expressions that we know and Love.
Medically Pie has done well and we thank God for that. He does have good days and a bad day here and there where he just doesnt feel good, but I guess that is to be expected. Right now we are battling Reflux he has always had problems with it but it seems as though he has bad spells with it. He takes the maximun amount of reflux meds so now we must consider other options for him. I will let you know what we find out we are waiting to get in to the Gastroenteroligist.
Pie doesnt miss much either he loves his sister and he watches her, we often wonder what he thinks?
I have days when I want to sit and cry about the situation and this terrible disease that has robbed us of so much and then, I thank God that we have him and that he gets good care and seems do do well for the most part.
I love each and every one of these babies and Pray for a cure soon. Please keep Pie in your Prayers and God Bless you all.

Monday, August 05, 2002 at 06:32 PM (CDT)

Hi All,
I updated Pies' page the other night and some how I hit a key and it was gone..... It was so late that I just decided to wait until now.
Pie is doing good he has been a little under the weather the past couple of days but he is doing better. We think he may have had a little virus or something?
He is growing he had a very hadnsome hair cut recently and now he really looks like his dad.
He has quite a routine here and he is so happy that his family can now be a family again!!!!
His little family is still here at nannie and grampas, Iam going ot miss getting up with him in the night I love helping with the babies. He went to Durham for his sisters studies and he did very well. They flew out via angel flight and he loves to fly.
Iam glad it is over for now and they dont go again untill October.
Pie got a new fisihing pole and if you look at the Pictures you will see he is already to go fishing.
Pie is soon going to be two years old just another month and a half and I dont have to tell most of you how scared i get at that thought. But Iam going to keep right on having faith and right on Praying for a miracle.

Saturday, July 06, 2002 at 09:20 PM (CDT)

Hi Everyone,
I wanted to get both of the children's web pages updated tonight. I have been working alot and havent been on to do it as I should.
All is well here and we didnt do any thing out of the ordinary for the fourth. It rained most of the last few days so it kind spoiled the Fourth.
Michael is doing the same he is finally gaining a little weight and like his sister I think it may be the new stomach med.
He continues to be shuffled back and forth from here to Augusta and it is driving me nuts. They really all need to be home now.
Michael as with all Krabbe children need a stable enviroment and they need a good schedule and Michael has always had that. So it kinda upsets the whole apple cart when his routine gets up rooted every few days.
I keep Praying that this will stop and that The Dr will let them come home for good.
Michael is so smart and he doesnt miss a thing. He is definatly a Granpa's boy. He just loves Phil and it is so funny to watch him. He doesnt know what to think of Michaela and he watches her alot.
We sure do love our Grand children and we love spending time with them. They really have made a diffrence in our lives. When I go to work I cant wait to get home to see them and play with them. I just Love them. Its hard to belive that Michael is going to be 2 in September, we are going to be sure to have a huge Bithday party for him. I have not a clue what we will get him really as he has every thing and all the love to go with it. Please keep him in your Prayers I belive in Miricles as I have said before, and I just know there is one for this beautiful big brown eyed boy we call Pie.

Wednesday, June 12, 2002 at 05:29 PM (CDT)

Hi All,
Pie is doing good and he is finally getting started on going to therapy once again.
Iam so excited that he will be getting this again he really needs it. He had a good weekend becaue his mom and sister came home he so does miss his mom and this whole thing isnt good at all. I mean keeping his mom from this poor lil guy he doesnt know what is going on. I will tell you right now he is very smart and he makes his desires known. It breaks my heart that he has to be seperated from his mom.I mean what gives people the right to sit back and play God with your lives. How dare they judge what is right and what is wrong??? The DR here in Maine is trying to get them home soon.
Pie shouldnt have to be dealing with his mom not being with him he has never had to be with out her. And stress well the fact is I cant stand this whole thing any more. I could see it is Michaela was sick but she is perfect and although not out of the woods she is doing great and should be home where she belongs. Pie has got some teeth trying to come in and he has been a little out of sorts with that, but Iam so pleased with all he can do and he trys hard to do things. He loves watching TV latley any thing colorful and he will raise his hand and look sidways and follow them on tv.I added some new pictures for you all to see so go check them out he is cute as ever.

Tuesday, June 04, 2002 at 08:09 PM (CDT)

Hi All,
I just had to come update Pie's page I have been so busy with Pie that I havent had time to do the kids pages as I should.
Pie has been at nannie and grampa's since we got back from North Carolina and we have so enjoyed it. I just love doing all his care he is so good and never gives us any trouble at all. He has a wonderful schedule and seems to be very content. He goes this week to see his peditrician and start his therapy again. We are so anxious to get him going again even though we have been doing therapy with him it will be good to have a therapist in the picture again.
As we speak Pie is down visitng with his mommy and sister. Tomorrow we are hoping for the Dr to say Michaela can come home if not tomorrow real soon. Pie needs his mom home with him too. I have been wanting to get himout walking in his kid kart but the weather has not cooperated much here it has been cold and windy for June and we are hoping it gets better soon. Then the black flies drive us in when it is nice??? Iam sure it will be better soon. Oh Pie should be getting his new hot tub soon and we are sure that is going to help him a whole lot.
I have added a few new pictures for you all to see how he has grown. Please keep him in your Prayers I am still Praying for a miracle.........."And I do believe in them"
Julie

Wednesday, May 22, 2002 at 04:55 PM (CDT)

Hi Everyone,
Today was a big day for Michaela, she had her central lines removed and had a periphial Iv placed. After careful consideration it was decided it was best to remove the central lines due to the bacteria in the blood, they have that cleared up but the lines are causing a problem. They felt that they either needed to pull them or replace them and so the Dr decided to take her off the TPN and place a porta cath in place next tuesday. We were a little nervous but they have reassured us so I guess we will go from here. Michaela has has a caloric increase in her formula and the Dr's also feel she will eat better with out the TPN, however she will be monitered very closely she has started to gain a little and I suspect that will be improving.
We are all going down to spend the weekend Pie misses his mommy and sister and they miss him very much. I cant wait to see the day we have our little family home again. It will all be worth the wait when we get to see Micki she is developing great she laughs and she smiles and she just loves to hear her name she hs 2 dimples in her cheeks and we arent sure where she got them. Iam spending Friday and Saturday at the Hosp. with her so the kids can go spend time with Pie. I just cant wait to spend some time with her. Well just thought I would update you all and ask that you keep the children in your Prayers we need all we can get. Love to All.
Julie

Sunday, May 19, 2002 at 07:43 PM (CDT)

Hi All,
My goodness I cant believe it has been almost a month since I last updated.
We arrived home almost 2 weeks ago unfortunatly we had to leave Keely and Michaela at my moms two and a half huors south of home. Pie cam home with Grandpa and I and his daddy followed after he spent the first week with mommy amd Micki.
We have so enjoyed taking care of Pie he is so sweet. He misses his mom and she misses him and talks to him a couple of times a day by phone. Actually we just got back from a long weekend down there so Pie could be with his mom dad and sister. He is glad to be back here though and he settled right in. He is so good and never complains. His Granpa bought him one of those fish bubble lamps and he loves it it changes colors and has bubbles ane he just loves watching it.
He has really adapted so well and he has his bed and all his toys back and he is on a really good schedule now. I give Keely so much credit as she takes wonderful care of both children and we just have pie and it is alot of work. work that we love though. we have been having so much fun with him.
Pie will be strting therapy and has all his Dr's set up to see him they are so glad he is back. Well folks I will close for now and update again soon, Thank you all and God Bless you.

Saturday, April 27, 2002 at 03:07 PM (CDT)

Hi everyone,
Thought I would update the kids pages today it is a very quiet day here and Iam bored.
Michael is doing good he is loving nannie being here and he can get his way all the time, he gets in to bed with me every morning and his mom doesnt like it but oh well.... we just cant please everyone as I tell Pie. It is fun to be able to enjoy them again. In just 10 more days we will if all goes well be back in Maine with our little family all together again. Pie and I have alot planned we are having a cookout he loves nannie and grampas porch swing and he has his wagon there and all his toys and he needs to get home and make sure every thing is the way he left it:)
Pie was a true fireman this week. I had him out for walk and enjoying the fresh air on Tuesday and a fire was raging out back of the Ronald house and we came in and reported it, it was a brush fire and the fire engines came and after Pie had his pictures taken with all the fire men and women, it came out very good and cute of course. So he is a true hero. The next thing on the agenda is a big boy haircut for Pie he needs one very badly, i'am not sure how he will like that but he has so much hair and it is long and in the very back it curls so you dont realize how long it truley is.lol Well folks guess I will go down stairs and see what the little ones are doing now. Please keep them close in your Prayers we need all we can get as we approach comming home soon.
"Luv to All"

Wednesday, April 10, 2002 at 06:28 PM (CDT)

Hello All,
Today has been a hard day for me Today it has been exactly one year since we first heard the word Krabbe and that our Beautiful sweet baby was stricken with a terminal disease. We lost all our hope and dreams that day. And I really lost more... for a long time after I fell in to the world of great nothingless. Where nothing is hoped, so nothing can be lost, Where nothing is expected so nothing can dissapoint and Where there is no one to blame when all goes wrong!!!!!!!!!
Well One year later and some of that is gone for this sweet Angel we call Pie has taught me that, People care and that we have friends in the same boat and we do have hope. Hope for a cure, Hope for early detection by way of new born screening tests. We have learned so much, like we have to go on we have to fight this and we have to get the word out. We have learned to believe in God and not blame him for letting this happen. we have learned we must have faith and We have learned that we can make each day count and each day is a new day with new adventures. Some days are diamonds some are stone. but we Thank God for every day we have with Michael he is our Hope. We pray for a cure and Pray for all the little Krabbe children and their families. If nothing else I have learned to Live and Love in a whole diffrent way that I never knew. So thank you Michael you are the best.

Wednesday, April 03, 2002 at 07:03 AM (CST)

Hi All,
can you belive we are moving right along in to spring! As I look out side this morning it doesnt look much like spring we got a couple of inches of snow last night and it changed to rain. It is messy out there.
Pie is doing good and we are ever so thankful for that. He is so funny he is a tad bit jelous of Micki, Keely went and bought Michaela a new portable swing and guess who loves it?????/ Yep Pie has taken it over he loves it, of course it plays 8 tunes and has all the bells and whistles, she sent pictures and they are adorable. We laughed about it he has such a personality. Although he cant express himself vocally he does in lots of other ways. The strangest thing though is he has learned to smile some its not the same as it use to be but it is a true smile, I cant tell you how happy we are to see that, we thank God every time we see one. After this last trip it made us all more home sick for them and they are also just wanting to get home to Maine. It shouldnt be much longer now. Pie continues to Love his Kid kart and his mom and dad take him for walks through Duke Gardens that are blooming already, he just loves the out doors.I havent had an update on little Ryan but as far as I know he is home and Iam sure Pam and Bill are very busy.Please continue to Pray for our loved ones and all the other Transplant children we know. I belive the continued Prayers is what keeps our children going. God Bless you all.

Friday, March 29, 2002 at 01:25 PM (CST)

Hello All,
We made it back from our trip to Durham. We had a nice time with the little family. The babies are precious as ever. Pie sure was glad to see every one especially Grampa. and you wont belive me but he smiles quite a bit now we caught several?? they are so special and iam sure it takes alot of work for him to do that.I had the chance to ask Dr K about his weight and she said that he is fine and that we wouldnt want him over weight as it would cause more harm than good and that he looks fine to her. I think he is so pitifully thin but he is however very long. Pie's hair grows so fast and wehn he gets home he will need a hair cut we have a lady come right here so that will be convient. We are hopeful that they will be able to come home aroung the end of April. I will be so glad as he will have his own Dr's back and start his therapy again and it is so much better with him here they dont know him out there and in an emergency as we found out while there we were worrying about how to get him the help he needed??? "his feeding tube became kinked" and what a mess we went through to get care for him. If that would have been here he would have been seen right away by his GI Dr. and it would have been resolved in a matter of an hour. Not in Durham. so I will feel better once he is home with his Dr's. We did however get him straightened around. He is so good he never compalins and he just does any thing. The plan is that on the 12th Phil and I will get a one way ticket back there and Kris will be riding back to Maine with Kris and all their stuff, so that Kris can prepare for their arrival back home, and I will be staying with Keely and the Babies until they can come back to Maine. We arent sure but are very hopefull that it will be around the 23rd of April so please say a prayer that Micki continus to improve and we can have them all back home."THERE IS NO PLACE LIKE HOME" Please continue to Pray for a miriacle for Pie he is so loving and good. We Love him so much.

Monday, March 18, 2002 at 09:26 PM (CST)

Hi All,
I had some new pictures of our little Fireman Paramedic to share and thought I had better get these pages updated again. Pie got a new fire engine and he just loves it believe it or not he loves the siren and the lights. Th truck came with an outfit so his mom and dad dressed him up and sent us the pics. He is just so cute and if youlook closely you will see him smiling....YEP he did and that is twice latley. Pie simply amazes us he tries so hard to do things and I think that is so special. We thank God that he helps Pie so much. Keely and Kris work very hard to see that he has things that other children his age would like and he gets so much attention I think that is what keeps him going. He has so many people praying for him too. Pie is getting lots of company this week auntie and uncle arrive there tomorrow and then Grampa I and Me me "my mom" arrive on Thursday. We are all anxious to get there! Pie is suppose to come to the airport to get us:) Nannie has packed some surprises in her suitcase for those babies. We are praying that Micki can be released at the end of April so they can all get home to Maine. We miss them all so much. Pie is getting a new stander from the Manzo's and we are so thankful for that they have shipped it and it will be here soon.So when he gets home his therapy will get going again and he I bet will love that stander. He must get tired of lying and sitting all the time. He continues to enjoy all his toys and especially his bubbling spa bath, which he fell asleep in the other night. He is just too cute!!! Please keep Him in your prayers so he may continue doing well.

Sunday, March 10, 2002 at 07:10 PM (CST)

Hello Everone,
I thought I would get these pages updated tonight as I have been working alot latley.
Pie is doing good and he is getting anxious to get home to Grampas I just know it!
We talk to him every day on the phone and he loves that. Pie got a new fire engine last week and it is so cute he loves all the noises it makes. I hear he is a tad bit jelous of his lil sister, but then again what 17 month old wouldnt be. You have to check out his new pictures i added. He is just as handsome as ever. Grampa told him we would be comming soon. Keely said she thinks that he is gaining just a little, I so hope so. I dont want him big but he could use a little meat on those bones. Pie is so good for his mom and dad. And he loves to go for rides in their new vehicle now. And he still loves MTV... I ask you all to say a Prayer for our babies and for Ryan Kristoff and all the other beautiful Krabbe children they all need lots of prayers.

Monday, March 04, 2002 at 07:07 PM (CST)

Hi everyone,
Pie has been busy his mom was helping him color and he just loved it!!I suppose it is because it is something new. We al try to keep his mind busy doing things. His Grampa and I miss him so much and cant wait to get back out to see them. We had planned to go out again on the 16th of March but the airfares are outrageous right now due to the next two monthes being spring break. So we may have to wait another week beyond the 16th. That was upsetting. However it will work out Iam sure. I keep counting the days until they are all home again. We talk to Pie every day on the phone and we see pictures as frequently as they can send then so that makes it a little better.
Pie is getting so tall now and he looks like such a little man these days. How i wish he and his little sister were home here at nannie and grampas house. keep watching for new pictures soon.

Tuesday February 19, 2002 10:02 PM CST

Hello every one,
Today Pie had to have his granulation tissue removed and it was painful for him. It always makes us sad when he has to hurt. Today Nannie sent a package out with some goodies in it for Pie and his sister I like to do a box up every couple of weeks and send it. this time they got some clothes. We had a special shirt made for Pie, because you all know he he is a fire fighter paramedic. He has his own fire truck bed and hat and all the gear and when he goes to sleep he goes fighting fires"we think" and I think he goes straight to his Grampas department here in Maine. So we had a special shirt with their logo on in made for him to wear. It is adorable as soon as he gets it they will take a picture of him in it and send it to me and I will be sure to add it here. Keely told me a funny story that happened yesterday so I will share it they were at the childrens health center going up in the glass elevator and every one was waving from below as they rose up and she was wondering why and when she looked at Pie he had his hand up, it was shaking and it looked like he was waving so people were waving back. I just laughed when I heard that. He is so cute and we all miss him and his sister so much. He is still doing well and I thought he looked like he was quite content in his last pictures. He just loves his tubby bath with his spa and when he is in there he can get his hand in his mouth which he loves to do and he works so hard to do it. I think the water makes his muscles relax and the bubbles too. We talk to him by phone daily and if he cries Grampa can calm him right down he loves his Grampa and all you have to do is say the word and he knows just who we mean.He also loves other kids when Gina was there she held his hand and he just loved the attention from her. Hey he is a little man you know and Gina is beautiful, and then at Kelly's he had another pretty girl reading to him Katie Kristoff, Ryans sister and he loved it. For some reason he calms right down and seems to be happy. Well it is late and I had better hit the hay I just had to update these pages tonight. Please keep them in your prayers. We love you all.

Wednesday February 13, 2002 2:52 PM CST

Hi All,
Pie is doing much better his infection is clearing up and they are going to burn the extra tissue off Friday, I do hope the numb it some. He is such a good little guy.Pie glad to have his sister home she came home today. He rather liked not having to go to the Hospitial today. And now both Mom and Dd will be home every night with him instead of just one of them and best of all his baby sister is home. He starts physical therapy tomorrow and we are going to see about getting hima stander so he can stand on his legs. He needs to try diffrent postions out. That is all for now and I will update again soon.

Monday February 11, 2002 7:43 PM CST

Hello,
Iam asking for some Prayers for Pie tonight.
He had a fever so the kids took him to the clinic and it seems that the area around his J tube is infected due to the granulation tissue. We have been having on going problems with the tissue there since he got the tube and have tried many things to clear it up. Today they put him on an antibiotic and then told them to bring him back on Friday and they would burn the rest off. I was so down hearted to hear this. I have a hard time when I know he is hurting.
And as you know it is even harder not being able to help. Because Pie had a fever this morning they wouldnt let Micki go home until they made sure all was ok with Pie.
So as far as we know she should be out patient tomorrow. I ask you all for an added Prayer for Pie to get over this infection ok. I will keep you updated on this. Thank you all.

Thursday February 7, 2002 1:57 PM CST

Hello,
Well Iam Home after a real nice visit in N.C. Pie is doing good and he seemed to like me being there every day when he came to the hospitial I would rock him and he just loved that and If i didnt take him fast enough he would start to fuss. He is so smart Iam telling you that you dont get much by him. He is more precious with every day. He has gotten so long and he had his hair trimmed a little. Grampa wouldnt allow us to do the back as it is all curls. He got to mee Gina Rugare and is she ever a sweet little girl and she loved Pie she just wanted to get her hands on him. Pie is so loved by everone that meets him you d have to see it, every where we take him people stop and comment onhow cute he is really and you know we even cought a few smiles he doesnt break out in a huge one but he does smile once in a while and it is a special moment. I have some sad news for those of you who may not know yet but CJ Cammarata the oldest child with Krabbe disease passed away this past weekend and we were so saddened with that news as CJ was like family and we all learned so much from him. if you would like you can go to www.krabbes.com this week Greg Sears has made a special page there in memory of CJ and it is really awsome and so thoughtful.
CJ was 6 years old. We will all miss him.
We are setting up Pies therapy and hoping to get him a stander so he can be in some diffrent postions. I will close for now and I will be adding new pics in a day or two.

Saturday February 2, 2002 11:58 PM CST

Hello All,
Pie is sound asleep but nannie told him she was going to update his page for him and add some new pictures. He is as handsome and sweet as ever. Pie makes daily trips to the hospitial to see his sister and he is always the best lil guy. He never complains at all. We have increased his feeds we have the hardest time to get weight on him, so we have decided that he will be on feeds most of the day and night just giving him a couple of breaks, and also lowered the pump to do this continous feed. He seems to tolerate it better this way.Pie will be seeing a physical therapist here and he also will have and eye exam. Also we are able to get his meds here now which is awsome! no more shipping them from home.
Pie enjoys all his toys we got him for christmas. He loves his spa and then we got him a light that twirls around and makes the pattern on the ceiling he realy loves that.I wish I could take him home with me to see his Grampa he miss's his grampa and vice versa... He talks to him daily on the phone and the looks are worth a million bucks. If only he could talk I d love to hear what he would come out with. Well I have added some new pictures, hope you all enjoy. Please keep them in your prayers and may God bless you all.

Saturday January 26, 2002 11:02 AM CST

Hello From North Carolina!!!
Please forgive me I feel so guilty as I havent updated this for a week! I didnt have his password, but I have it now so here we go. Pie is such a good boy and seems to be enjoying having nannie around although we know he prefers Grampa...lol
Pie continues to amaze me he is so alert and he doesnt miss a thing, he watches everone and listens and responds to things. And every where we go here in the Hospitial pople stop and talk to him and comment on his outfits and how cute he is. And if ever they are late arriving on the floor everone is asking where Pies is. Yes they all call him Pie also. Terry & Scott Hammonds "Angel Liams" parents are here visiting and Pie I think has a crush on Terry.lol he seems taken with her:)Pie is going to get a big boy hair cut hope fully today? It really has to be done it is way to long. we are not cutting the curls off though.
Pie talks to Grampa every day and we cant wait to get him and his little sister home to Smyrna. You should see how excited he gets to talk to Grampa. well i have to go for now I have company. I will update this again sooner I promise.

Friday January 18, 2002 11:06 PM CST

Hello Again,
Iam updating the sites tonight as I fly out tomorrow. Cant wait to see our precious gran babies. Hope they know Iam going to cuddle and hug and kiss them a whole lot!!!
We received bad news today Pie is still not a candidate for the transplant. On the other hand he is doing very well at this point and we can be ever so thankful for that. I belive it is all the Prayers, and all the Love and attention he gets.
Pie is due to get his very first hair cut nannie and Momma are going to take him. it is really long now. I have to admit I hate to have it cut though.Pie is such a good boy he really is and we are so proud of him.
He goes with his parents every day to the hospitial and he just makes his self right to home there, they play with him and he watches tv and takes a nap and goes for rides in his kid kart.Iam going to close for now but I promise to keep this updated while I am out there. Please Please keep Praying.

Hello,
I feel so bad as i havent updated in a while.
Pie is doing very well, he has his MRI done yesterday. Iam not sure when we will find the results out? I you have read Micki's page you know that Iam going to go out early.
I feel Iam needed there, The kids are getting tired as they live at the hospitial and they havent gotten much sleep for a long time now. I want to be there to lend a hand and help take care of the babies and give Keely and kris some time to rest.
I just cant sit here and worry all the time.
And they shouldnt have to go through this alone. I plan to spend time with Pie during the day and stay with Micki some nights and let Keely and Kris go home and get some rest. I cant wait to play with Pie and spend quality time with both. Nannie is going to call him and tell him she is comming. And i know he is going to say" that nuttty nannie is comming and that means lots of hugs and kiss's and her singing!!!" Iam sure he has warned Micki about me...lol Iam so proud of Pie as he ajusted so well down there and he does whatever they need to do and never offers complaints. Iam thinking he needs a little haorcut while Iam there maybe Keely and I can take him for his first hair cut? We are hoping ME Me will be able to come and help also but at this point we arent sure if she can get the time off or not? I plan to leave Saturday morning and arrive Saturday afternoon. Please keep the babies in your prayers. Love to all.
Julie

Tuesday, January 08, 2002 at 08:08 PM (CST)

Hi All,
Poor Pie has had trouble with that feeding tubbe they installed yesterday at the clinic.
nothing was going in and it just wasnt right so after alot of phone calls it turns out that it was kinked and he hadnt eaten in a while and they have to wait for the right one to come in... I cant belive that IAM FURIOUS...At this point iam going to get ahold of his pediatric surgeon here whom we like very mush and get all his reports and fax them to the Dr's down there so there is no question what they did here and why. It has always worked well for Pie and I dont want them changing any thing,
We have all worked hard to take good care of our Pie and I do not feel comfortable at all with them messing with him. I wish I had him here long enough to take to Bangor and let his Dr fix him up. I hate to vent here but Iam so wound up and the thought of a huge Hospitial like that not having easy acess to a mic-key J tube totally sends me on a melt dowm. They put this totally huge tube in that is not fitting and its pulling at his site and its well just terrible. Poor little guy has been so good and never complains and he deserves to have thie best.
Nannie is going ot se to it tomorrow I plan to get a fax from his Dr here on just what he did and used and all that stuff, and then I will fax it down there and I will feel better. I thought id let you all know and please keep Pie in your Prayers.

Sunday, January 06, 2002 at 04:07 PM (CST)

Hi All,
Poor little Pie, his feeding tube fell out today! his momma and dadda had to take him to the clinic. It seems the baloon failed so they will have to place another new J tube tomorrow. He will have to go to day surgery at 9am and have this done.
I felt so bad the poor little guy. His momma tells me he is fine and they taped it in place for today and tonight. He is a real trooper he never complains and he just goes with the flow. Grampa and I are so very proud of oour little Pie he is such a good boy."Handsome too" LOL. It wont be too long now till we go down and I cant wait to see Pie and Micki and thier parents. I figure if all goes well we will have them home in early May. I will update this tomorrow to let you all know how he made out in surgery. Love to all,
Julie

Wednesday, January 02, 2002 at 06:48 PM (CST)

Hello
Pie is doing very good and we are ever so thankful for that. He seems to cope well with their busy days. And he lets them know if he is mad... Temper wow he does have one at times, but it is his only way of expressing his fears and all that. I say he is intitled. He loves his Christmas present that Grampa and I got him and iam putting a picture up there for you all to see, it is good therapy for him and worth every penny. He almost falls aslep he gets so relaxed. He just kinda floats around in there.
I wish we didnt have to be so far away.
Pie wil have his new MRI done on the 15th. That is all I will say on that as Iam not sure how i feel about that. I cant atke any more heart aches. He gets lots of attention and I can imagine he wonders what is going on any ways. Grampa and I talk to him daily, sometimes i sing his favorite song, at least one verse of do your ears hang low.
They dont call me nutty nanny for nothing:)
I will keep you all updated Please keep Praying. Thank you all so much for all you do.

Wednesday, December 26, 2001 at 06:06 PM (CST)

Hi All,
If you have read Micki's page you know we made it home and we had a wonderful time.
We hated to leave the little family.
We had a very nice Christmas. Poor Keely ended up very sick and in the hospitial over Christmas she got a severe infection and at first they didnt know what but now say it is Mastsitis. she fought a temp of 105 all day and all one night. they ran antibiotics and fluids and by christmas morning it hd come down some. She was released today and said she sitll doesnt feel that well but is glad to be home.Kris will be glad as he was doing the mommy thing and we all missed her as we were very busy with the little ones.
Well Grampa and I took Pie to our motel room and he spent the night between us. I think that was so special he is such a good little boy he really is. He is soing fine and we have a bit of news as far as Pie goes. They have scheduled a new MRI down there for him. We have alot of mixed emotins about that but we want it to be looked at. Pie seems to do so well and his grampa and i bought him a bath spa and he absolutley loves it!!!!!! he relaxs and almost falls asleep in it. It is so cute to watch him. We were really pleased as it is so hard to find things that he can use and will like also. That was definatly a hit.
His hair has grown since I was down.
For christmas we got a wonderful photo of the two babies together and then one of the family. I cant wait to show those off. Well i will close for now we are exausted and are going to settle in now. Hope youall haad a wonderful Christmas and may the peace of the new year be with you.

Wednesday, December 19, 2001 at 07:34 PM (CST)

Hi All,
Nannie & Grampa made it and Boy oh Boy.. was I surprised! I wouldnt let them put me down and I watched Grampa constantly I felt sure if I took my eyes off he'd disapear.
Mom says I was milking it for all I could.
Well nannie and grampa got a present from me!! It even made them cry. they were playiing with me and both hanging over me and ...and then I smiled a REAL smile somethiing I havent done on the outside for a very long time. Momma and Dadda arent sure if they believe it but it is true, they are just jealous. I had to give them a special gift. I love my sister Iam not sure what to think of her I sigh sometimes.
Iam just glad my nannie and Grampa came to Durham. We are having a wonderful time so far. We will keep you all informed we love you all please keep us in your Prayers.
Love Pie

Thursday, December 13, 2001 at 07:15 PM (CST)

Hello,
Hope you are all having a nice time getting ready for the Holidays? We are doing the count down to Durham thing. Grampa and I cant wait to get there. I think We should talk Grampa in to going a day early.
I added some new pictures on both sites tonight so hope you go look at them. I cried when i got them. as each day passes it is harder to be away. Iam very proud of the kids they are taking such good care of their babies. We wont want to leave once we get there. Micheal as you can see and his sister got to see santa today at the Ronald house where they stay. Pie didnt know what to think of him. When I look at that picture I can tell what he is thinking..
The kids are busy going to clinics and appointments all during the days now, things are going well and Pie seems to be taking it all in stride. He is so good!! he goes wherever, and if he gets tired dadda goes home with him. He is such a good boy and we love him so much, cant wait to get my hands on him again. well i will close for now and write again soon.
Hugs, Julie

Tuesday, December 11, 2001 at 07:49 PM (CST)

Hi Everone,
Thought I should update this tonight I tried it last night and messed everything up. The Kids had a busy day at Duke today. I guess that things are going to start happening now and things will be busy for them.
Pie is doing good, I think he is gaining and it looks as though his hair is getting long. I just think he is so precious and belive me when I say, He is so missed around here. We just hate this not seeing him daily. Iam told he loves his sister and cuddles with her. Cant wait to see that.
Also he kiss's her. Grampa and I cant wait until we fly out there. I thank God that we have all the family and friends supporting us as we do. Kelly is so good to everone and lets the kids bowrrow a vehicle... Unbeliveable. Everone that signs the guest books.. You dont know what that means to us. All the nice e mails and support we get through all of your words."Thank You"!! Pie is now eating straight kinder cal and is doing well on it and it also helps his bowels some so that is good also. Pie also got a Durham city fire hat.. we laughed as he has a fire engine bed and so now he has the hat.
I say a prayer thanking God for hvaing him and his siter in our lives for he has changed my whole life. well I will close for now. Till next time God Bless you all and thanks for all you do.
Julie

Thursday, December 06, 2001 at 09:10 AM (CST)

Good Morning All,
At one Thirty this morning we got a call that Keely's water had broken and they were on thier way to the Hospitail. Keely is now in Labor and we are waiting for Pies little sister, Michaela Lynn Calaman. Michael has been a little trooper and is with his dad and mom he is tired as he hasnt slept after getting woke up. I think he is just as excited as the rest of us that his sister is comming! Her dad and I are going to wait until the 18th to fly out as planned as the tickets are bought and we want to spend christmas there any ways. It is hard however to not be with them during all this as we are all close. Iam very proud of Keely she is in real good sperits and is being very brave. Of course she is anxious to have the baby in her arms. They plan to have Michael and Michaelas pictures done together so I should have some to post here later tonight. Please keep them in your Prayers and I will up date this as soon as I know.
Julie

Saturday, December 01, 2001 at 07:51 PM (CST)

Hi All,
Woah what a past two weeks. I'am exausted to put it mildly. My Mom and i arrived in Maine today, we had been down in N.C. with Keely Kris and Pie. they are settled in to the Ronald Mcdonald house now and we had a busy week. Michael so enjoyed the airplane ride there. Angel flight took them and he even was able to listen to the head sets so he could hear everone. Oh and he got a real cute bear dressed like a pilot goggles and all it is cute. My mom and I were glad to get home but also didnt want to leave does that make sense?. I was so pleased to meet everone angel Davids mom Kelly who shuttled us every where and treated us with such compassion. We also met Stacy Fry and Leandra "sweetie that she is" Keely and Kris got the room next to Stacy and Leandra and Stacy has been a huge help also. Leandra and Stacy are due to go home Friday. We are so happy for them, I do know that Keely will miss them. It was so wonderful that we got to meet and talk with everone and share our children and our stories. We even went to the BMT. unit and met Ryan Kristoffs dad, he too shared thier story. Ryan just had his transplant that day and he is a handsome little guy. Michael had an appointment with Dr K. she is very pleasant and we were so glad to get to meet her in person. well iam so tired iam falling a sleep here and so I shall close for now. Im back and this will be getting updated alot now as they are all down there and I am here:( Please keep Michael in your Prayers, as he is doing pretty good and cute as ever! check out the new pictures. Love to All
Julie

Sunday, November 18, 2001 at 06:15 AM (CST)

Hi Everone,
Well iam up and around early this morning the day has arrived that we leave to go to Southren Maine for the week to enjoy family there before we all leave for Durham. We will fly out on Monday the 26th. Today is the last day the kids will be home for months and i really dont know how Phil and i are going to get through the winter with out Pie here every day? This week has been filled with so much to do and pack and seeing diffrent people. Michael is a very popular little man around here and alot of people are going to miss him.
He has to see his neuroligist in Portland tomorrow and also his genetics dr. They all are so good to us and Michael, so it will be nice to see them before we go.
Michael as Micki said is a little inspirational prince. He has brought us so much happiness and he has brought so much love and the poeple we have met through him is so awsome. Every day is a new day and we must take long deep breaths and move ahead. Keely is wanting to have the baby now she says she is huge and we know she is miserable who isnt at the end?? iam wondering if she will make it to the 20th of Dec??? I am anxious to hear what her OB Dr in Durham has to say. We think this is a bigger baby Michael weighed 7lbs 13 oz and i have a feeling this one is going to weigh a bit more? Another exciting thing is all the nice people we have yet to meet in Durham, there are alot of families out there now and we have been following their stories and it will be fun to actually speak with them and then we have angel Davids mom Kelly whom we simply must meet. Terry and Scott Hammonds angel Liams parents .
And Anne, Gina and Micki in February.
You know we have to be thankful for what we do have and what God provides and i count my blessings every day and you know what there are lots to count when i stop and think of it. I will stop babbaling now and update this at the end of the week again.
We love you all and hope you all have a wonderful thanks giving with your friends and family.
Luv Julie

Monday, November 12, 2001 at 07:39 PM (CST)

Hi Everone.
I just got home from work and thought id better update this site tonight. Michael is doing well and he is finally gaining weight it is a very slow process. I just stopped by his house to see him and he was sound asleep in his fire engine bed that he loves so much. he is so darn cute that i just wanted to pick him up and hug him. Unfortuantly his mother would have frowned on that one.... We are making final plans for N.C. we all fly out on the 26th and i cannot imagine being away from my precious sweetie pie. His granpa is having a hard time with it and iam thinking that we will be out there as much as we can be.
The social worker from Duke has called and plans are being made and that makes me feel a whole lot better and i can at least enjoy what time the kids have left home. as they leave next sunday for southren Maine, to visit before they head out. I have met so many great people on te KFN and i dont know what i would do with out them all. They have been there or are there and can help us sort so many things out and that is a huge help. I will update this again before the kids leave, we send our love and ask again for all your prayers.
Julie

Tuesday, November 06, 2001 at 07:33 AM (CST)

Hi Everone,
Well here we are in to November and we have been so busy trying to get ready for the trip to N.C. we still dont have an agenda so i guess things will happen with out a whole lot of planning. Keely, Kris, Michael and I will be leaving on the 18th for southren Maine. Michael has a couple of appointments before they leave for Duke.
Then they plan to spend the week with family down state. The we will fly out on the 26th for Durham. My mom and i will go for a week to help get them settled in and then we will come home and wait for her due date and her dad and i will fly out.
As of right now we arent sure where we will be staying and that is nuts!! but i suppose we will find out soon.Michael is doing good and we are so thankful he went to the pediatric surgeon last week about his tube and he mentioned haveving the wrap done but we have decided that we wont put him through that at this time as the reflux isnt that bad and we dont want to make any thing harder on him, he deals with enough. so we are trying reglan and will see how that helps. He still continues to play and it is so sweet he really has to think but he can reach for things and he loves his toys. If you havent looked at the picture album you may want to i have updated it. well i suppose i will close for now but i will keep this updated as events start happening.
Hugs to all.
Julie

Sunday, October 28, 2001 at 06:25 PM (CST)

Hello again.
We thought we had better update today as we have a busy week ahead.Michael went to the Dr last week and he finally gained a little weight!!!!!! We have been trying so hard to get this lil guy to gain and its a slow process. This was his last Dr appointment with Dr M. until we get back in the spring and we are going to miss her, she is a very special Dr. and Michael loves her too. She gave Michael a very special present for his trip to Durham.
November is approaching way wo fast for me and grampa. I am getting more and more stressed we have worked so hard to be prepared for the trip and they arent sure if we can even get in to the Ronald Mcdonald house and i erally feel a motel room is out of the question with Michael? Ill keep praying, and to date we havent heard any thing about appointments, I guess i'am the type that wants all this clear now! and iam not getting good results. I want to know where we are going when we arrive and how we are getting there and when the appointments are and oh its just to stressing to think about it all. Some how it has to work some times i feel like we are all alone to work all this out and it gets to me. This week we have to take Michael to Bangor to see his surgeon they are probably going to change his feeding tube and chek him over good as he has alot of reflux at times.
He also has Physical therapy after that if he is able to do it? We do alot with him at home and he still loves to get his grampa and he turns his head good also.
OHH i forgot he had 2 shots the other day, he was such a good, big, brave, boy he only cried for a minuite and nannie went and bought him a Blues clues boom box that plays 6 tunes and lights up he loves that of course because it is musical. Me me says he deserves something for being so good.
He comes to nannies and Grampas every day and i know that it is going to be a long very hard winter for us even thought we plan to be down there with him as much as possible. I pray for God to give us all strength to get through this together as a a family.
I will try to update again at the end of the week and let you know how he did at the surgeons and physical thereapy.
Bye for now

Sunday, October 21, 2001 at 06:54 PM (CDT)

Hello again everone,
Iam sorry i got a bit behind here..
Michael is doing good right now and we are ever so thankful. The biggest problem is getting him to gain weight. we try and try and he just doesnt seem too gain? He is so sweet and so very much loved, his hair is getting a little long it is baby fine and curly in the back.He is getting so he wants his Grampa to put him to sleep of course momma will do when grampa isnt around.. It is so cute if you watch him you can tell exactly what he is thinking, we love the looks we get sometimes. What we would give to see another smile i keep saying maybe someday he will. He is still reaching and tries so hard to play iam adding a picture to the album of him getting his grampa the other night it is so cute. We spend alot of time doing therapy at home as well as he does go to a therapist who is very good with him we want him to continue the therapy in Durham also. He has quite the schedule he loves his fire engine bed and the red night light it has and he looks for all his belongings when he goes to bed, Keely said he looks at everything to make sure it is all in its place. He knows right where every thing is and its so cute to watchi him hunt and look for his things. we are so thankful that he still can see and hear well and also he seems so smart about his surroundings. Yes i still sing do your ears hang low to hime he loves that song and
associates it with me and if ever he cries when i sing that he stops and he knows it probably by heart... and i keep adding new verses....Poor kid he probably thinks his nanny is very silly. He is the best little guy for all he endures. We love him to pieces...
take care everone

Monday, October 08, 2001 at 05:32 PM (CDT)

Hi Everone,
Iguess winter is on its way here in Maine and it is so cold and it was even hailing a while ago! ughhh i hate winter.
Pie was sick last weekend with a virus of some sort he didnt have a cold but it seems that he had some kinda flu bug as he had a temp, and diarreah which he never ever has.
we took him to the pedatrician and just took him off his formulas and gave him pedisure and ibuprofen for the fever thank goodness he got over it in 48 hours.
I just hate it when he gets the least bit sick. And then there is the teething thing he is biting and biting and no teeth yet you can see them, but they just wont come through, i feel so bad for him because you know he is in pain.
He is now a year old and he i think knows it for he only has one nap a day now and the rest of the time he fights it.
His mom said he isnt sleeping clear through the night any more either? he wakes periodically to see where she is:)
He is very smart. He loves his wagon and loves to be toted around in it with his ballons attached. Hope you all got to see the news paper article it was nice the pictures were also very nice.
It wont be long now before the Duram trip. The plans have been under way and it is getting to be time to make final living arrangements there we are just praying the Ronald Mcdonald house has a room for us when we get there.I have to remind my self to take one day at a time.... very hard to do under the circumstances. Well this Saturday is the benefit supper and we have alot to do in preperations. It will be nice to see and talk to everone. For now we will close and will update again soon.
we all send our love.

Monday, October 01, 2001 at 07:31 PM (CDT)

Hi Everone,
We had a very busy weekend and nice Birthday party for Pie, great grammie "me me " was here. Michael had a huge pooh cake that was so cute we hated to cut it. we had had about 14 family members here and it was a busy day. I hate to have to tell you all that michael did well in the morning but around the time for his party he didnt do well it was way too much stimulation for him, even though we tried to keep it low keyed he knew things werent normally like this and he was irratable. so his mom just held him and so did his grampa.
For his birthday he got a Red wagon which he loves to ride in and he got lots of nice clothes for his trip to Duram. He got a new tape player a big boy one! and also a new tape for it and he got an angel to watch over him as he sleeps and a prayer bear.
so many things, too many to list
oh i do have to tell you he got lots of mylar ballons which any one who knows pie knows they are his favorite thing:)
He did settle down after everything went back to normal and as for us we learned a good lesson that he cant take to much stimulation. His mom told me that he slept in until 8 am this morning and that is out of the norm. he has had a good day today and nanny took him outside in his wagon for it was beautiful day here today he loved the ride complete with baseball hat and sunglass's" he was stylin!!!!!
Today started off with a trip to the news paper office and they are doing a story on the benefit supper and the disease and transplant ought to be interesting . we are hoping for some public awarness, Pie sat through the whole thing and never said a word he was so good. well i will close for now and will keep everone updated on events.
we love you all and thank you for the wonderful things you write in the guest book and we want to thank everone for comming to his party and just for being you, you are all special.

Thursday, September 27, 2001 at 08:02 PM (CDT)

Hello again,
As we are going in to another weekend we are getting ready for pie's first birthday, on Sunday, and i cant believe it has been a whole year!
Michael has grown he looks like a little man now. and his ways are changing, he refuses to go to bed early now and he doesnt like afternoon naps at all.
He also wants some one talking to him all the time which we love to do any ways! so we talk about just any old thing and he tries to talk back and nothing comes out. he also tries to reach for things and sometimes he gets them and other times it is just too much stimultion. He enjoys walks and loves rides in the car. He really responds to his grampa. He and grampa are the best of friends and they play alot, and once in a while they catch a quick nap together:) I just love that boy he is the light of our lifes. he is getting tall and although the weight is going on slow he is gaining a little.
we have a nice party planned and great grammie who we call me me is comming to his big boy birthday party. we cant wait we have made decorations and it will be nice to see everone share his special day with us. It is going to be a long winter with alot going on and i worry about taking him out of his inviroment, but you know what they say one day at a time.... I have to remeber that once and a while.
well i will close for now. we love you all

Saturday, September 22, 2001 at 09:36 AM (CDT)

Hello Again everone,
We here have all been busy as usual. i think everone is. My computer has been sick so today i plan to get a diffrent one. Michael is doing good although he has had worsening acid reflux and we had to in crease his zantac. so the result of that is that he has had some hoarseness and that is improving now.next Sunday will be his very first Birthday and we are haveing a huge birtday party here at nannie and grampas house. If Michael could talk he'd ask for a pooh cake he loves pooh so that is what he is having for a cake. mostly we will be getting him winter things for his Duram trip.
seems all is moving along good with that. the news papers here and possible even the tv station want to do a story on this. we will keep you informed. at this time we have planned a fund raiser benefit supper for the 13th of October.as far as we know the kids willbe leaving for Duram some time after thanks giving. i guess id better go for no or id ramble on forever. May God bless you all. Julie

Wednesday, September 12, 2001 at 09:46 AM (CDT)

Hi Everone,
Michael is here at nannies and we were thinking that we should update our journal.
Michael is getting soo heavy he goes today to get weighed and i hope he tips the scale at at least 17lbs. we are so hoping.
We are so busy latley and we have to get moving on some fundraisers and i have no direction in that field at all?
Michaels Birthday is comming right up and we are having a huge party and he has told us he'd like a pooh cake..lol we are getting in to fall already and doesnt seem possible. the trip to Duram wont be that far ahead probably the first week in Dec? we are not clear on that yet. well i guess its time for pie to go for a walk he loves that so i will update soon and let you know how the weight gain is going.

Friday, September 07, 2001 at 07:00 PM (CDT)

Hi Everone,
We all made it back safe and sound from our Portland trip. Pie had a terrible night the night before being some where diffrent and all he didnt sleep the whole night. momma had him some of the time and then at 3am nanny took over, then we left at 8am to be in portland by 9am , first stop was pie's neuroligist and we really like Dr,R. he is very plesant and he said all seemed well and he was leaving the meds the way they are. so we were pleased. then Keely went to have her ultrasound done and Pie wish's to tell you all that he is getting a baby sister for christmas. Her name will be Makayla mom is not sure on the middle name yet? Then it was off to Michaels genetisist Wendy and Julieann are two awsome people who have been with us through out this journey. they know all the ways to get things done. they were glad to see Michael and they have been working with Duke to set everything up and i tell you they are making things happen.
Michael also has gained weight we are estatic. he was 16lbs cool huh. we are so glad to see that happen. well i suppose id better go for now ill update again the first of the week. love to all and take care.

Sunday, September 02, 2001 at 12:41 PM (CDT)

Hi All,
I feel so bad for i havent updated this in while? where does time go any ways?
Michael is doing pretty good these days and continues to amaze us with his ways. he can still get his hand to his mouth, it takes alot of thought process which is visually evident but he can do it. He definatly knows who everone is and he has also developed a little attitude. We had his to his pedatrician the other day he just doesnt want to gain weight. he stays around 15 lbs so, Dr M gave us a oil to add to his formula, it adds fat and protein, also we are adding kinder-cal to his feedings, this had gotta work!! We travel to Portland this week to take Michael to see his neuroligist and genetisist, and his mom will also have a 3-d ultrasound while there and pie wants to know what his mom is having.
Plans have changed a little and probably will continue to do so until the baby is born but ,Keely will have to have the baby at Duke and they want here there 2 weeks before birth so it looks like christmas in Durham!!!!! please continue to pray for pie i have to believe there is hope, i refuse to give up.

Saturday, August 11, 2001 at 08:14 PM (CDT)

Hi All,
I have been meaning to get to this all week.. Where does time go? we have been busy this past week.Michael had his Dr's appointment with his pedatrician. It went well he gained 6 more ounces in a week so we were glad to hear that. and i suspect he has gained since as he looks like his face is fuller to me. Tomorrow we are expecting to hear the results of keely's amnio and i must say that iam worried. But i need to think more positive. i was so pleased to see all the guest book entries they mean so much to me it seems as if i go to the KFN first then check this out and it just gives me such support to come here and write, and see that others care enough to stop by. I really believe that we are one big family going through this together.
Michael seems to be doing ok these days, one thing i just hate is that he cant seem to swallow good and that even a drop of any thing in his mouth and he has to work and work and sometimes he starts to choke. but i feel like we must give him a little to wet his mouth and cool it down in this heat.
He tries so hard to talk and his mouth goes through the motions and just no sounds come out. He is so precious that when he does that we cry. he loves to play with his grampa and he still gets his hand to his mouth and he thinks that is the greatest thing. we enjoy him so much and he doesnt want for love or any thing else that we can provide. I will go for now folks but will be updating again as we await the amnio results. please say a prayer. again thank you all for the nice messages that i find in the guest book. I love you all and i pray for all of the familes and what they have and must endure.

Sunday, August 05, 2001 at 08:35 PM (CDT)

Hi All,
Wow has it been hot here. Michael is doing well to spite the heat. I must tell you he is teething and the poor guy is in pain his bottom gum is so swollen we have done every thing to help him and he tries to bite us.. i just wish he could. He goes to the Dr tomorrow to be weighed he had gained 4 ounces last week and we are hoping to see a pound now.Keely has increased the rate on his pump and he has done well with that so far so that should help the weight gain.
well i will close for now and write again after we go to the Dr's tomorrow. oh and before i go please please pray for Michaels new sibling also as we await the amnio results any day now. seems like we ask God for so much every day and yet he is there when we ask him for strength...
till tomorrow everone..... God bless you all.

Wednesday, August 01, 2001 at 02:31 PM (CDT)

Hi Everone,
We thought it would be nice to do this journal as we have so many loved ones that like to know how Michael is doing from day to day. Today as we write this michael has had a good day despite the heat! Michael has had increased stiffness that the meds, are just not helping he is currently taking valium and baclofen. we arent really impressed with the results but have been told that we sorta have no choice we either can enjoy him awake and irratable somewhat with stiffness or.... asleep so i guess there is no happy medium with this terrible disease. Michael got his new kid kart in July he loves it he also got a new recliner chair from grampa and nanny and we are currently trying to get him a hot tub as he loves laying in the warm water. he would stay there if we'd let him.
we are having a hard time to get soem weight on him but i belive we are on the right track now. Hard to belive but in september he will be a year old. well that is it for now folks. check in again

Wednesday, August 01, 2001 at 02:27 PM (CDT)

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