History

Journal History

Sunday, November 24, 2002 at 04:40 AM (CST)

Ashley, we love you so much. Today, marks 1 year since our precious girl left our care and joined other angels in heaven. It is hard to believe that this amount of time has already passed because there are days that feel like it was only yesterday. Our memory of the time and events surrounding this day are still so vivid and we often wonder if you left us way to soon. We know that God had a plan for you and that time must have come, but why then, why not a few more days, weeks, months, or even years. Our peace is knowing that you are safe and free from the earthly pain you endured.

We are still amazed at how much love you showered us with each day, even when you were suffering for your next breath to continue on. We have come to know so many wonderful people because of you, some who share our experience and others who were simply taken in by your beauty. Your beauty, strength, and love continue to sustain us each day. While this marks 1 year that you have been away, you have never really left us. Your memory beats daily in our hearts and fills our soul with so much love. We simply close our eyes and we see you again, watching over us as you always have.

Your little brother Austin loves you so much also. Austin has truly been a blessing that has helped make each day a little easier. Ashley, we know your spirit and love surrounds your brother, we see that every day we look into his eyes. You have made such an impact in our lives and others that got to know you. Someday, with continued awareness and advances made in early detection, “Krabbe” may be something our children won’t have to endure.

Ashley, you are making a difference, you are making it possible for family and friends to tell your story and stories of other children that face the same struggle because of the strength and love you continue to reign down on us. For this and so much more, we are blessed to have you in our life. We are sad today, but full of hope. Sad because we long to hold you again and wish this was only a dream this past year. And hope, that you are running and playing in heaven, free from any pain as we envision you are. Your memory and spirit is with us each day.

Thank you for watching over us daily and continuing to shower us with love. Ashley, we love you so much and miss you dearly. XOXOXOX (Eskimo and Sugar smack kisses)

Daddy, Mommy, and your little brother Austin

P.S. Some of our favorite photos of Ashley have been added to “photo’s”, please check them out.

Saturday, August 17, 2002 at 12:42 PM (CDT)

Hello,

My sincere apologies for not updating this site since Ashley's birthday. We are doing okay and continue to miss our precious Ashley so much. David has been busy working with other Krabbe parents to develop a Krabbe brochure to be used to spread awareness to the medical community and other families. It is now available and is being used by the wonderful families that have come in contact with this horrible disease. It is all our hope that we will see the day when our children will not have to suffer from this. This project has been very therapeutic for David as it was his promise to Ashley to help eliminate Krabbe. Ashley's strength and unending love in his soul guides his efforts. I hope you will become part of these efforts in Ashley's memory. Cindy has been busy awaiting the birth of Ashley's brother which was due the end of August. We have tested our son for Krabbe during early pregnancy and know that he is not affected, but will be doing a confirmation test to see if he is a carrier at birth.

While I write the first paragraph to let you know what we have been up to, I now turn to the present. Angel Ashley is proud to announce the birth of her baby brother. Austin Nicholas was born on Friday morning, August 16th, was 20" long and weighed 7 lbs 15 ozs. He and mom are doing very well and will be home in the next day. I know that God and Ashley watched over us the last 10 months and have given us this gift of life. Angel Ashley will watch over her little brother and Austin will get to know all about his special sister. Last night, there was a time when Austin clasped his hands together and closed his eyes almost like he was praying to his sister. I think he may have been which shows me already that the connection between these two will be forever.

I have added a few new pictures of a tree planted on Ashley's birthday, memorial trees planted in her memory, and a picture of her new brother, Austin. Thank you for your continued love and support of our family. You are all blessings from God for caring for us.

David, Cindy, Angel Ashley, and Austin

Sunday, May 05, 2002 at 05:01 PM (CDT)

Happy Birthday Ashley...

At times it seems like it was just yesterday that we were holding our precious little girl, but then at times it feels like a long time ago. Emotions have a strange way of making each day a memory. Our memories we hold of Ashley during her 18 months with us are so special. Today is special because God gave us the opportunity to love and care for Ashley. What we experienced with her - the love, devotion, and strength she gave us is something as a parent you treasure for a lifetime. Our hearts ache to have her here with us, but we know she is in a better place away from the pain. Ashley is locked deep in our heart & soul and her love is what makes each day possible.

Happy Birthday Ashley - we love you so much.

For those that have followed Ashley's journey, thank you for being a part of our life. Your prayers and support have made a difference, more than you may ever know.

Love,

David & Cindy

Saturday, December 01, 2001 at 04:54 PM (CST)

It is difficult to find the right words to begin this journal entry. Our beautiful little princess is now an Angel in Heaven. On November 24, 2001 at 9:50 a.m., Ashley passed away peacefully in our home. Although this day came sooner than we thought, it is comforting to know our precious Ashley does not have to fight this awful disease anymore. We know in our hearts she is in a wonderful place and can now do all the things she was not able to do before. But it still hurts so much not having her here with us.

Since October 12th, Ashley had been on a low level of continuous oxygen to aid in her comfort. She did very well for the next four weeks. She was staying awake for longer periods during the day and sleeping more hours during the night. She wasn’t coughing very hard, her secretions were not as thick and she hardly threw up at all.

The highlight of October was dressing Ashley up for Halloween. She was an adorable little Tigger and we had so much fun showing her off and taking pictures!

We even had gotten more help from the nursing agency in November and we had a lot of family helping care for Ashley when the nurses were not available. Just when everything started to get easier for Ashley and for us, our world was turned upside down again.

Looking back on the last week of Ashley’s life, we know that her color was not quite as good as it had been and we discussed increasing the oxygen level. Her secretions were getting thicker and she was throwing up again. Otherwise, the week seemed to go pretty well. We are so happy that several family members and friends who had not seen Ashley for a while were able to see her that week. Little did we know at the time how important those visits really were.

Ashley’s funeral was on Wednesday. She looked so beautiful and peaceful. She was surrounded in the room by all of her stuffed animals, her books, her blankets, all the photos and her family and friends. We wanted her funeral to be a celebration of her life with us and also a celebration of her new journey just beginning. Following the service, we had a balloon release just outside the church. It was an incredible view as 150 colorful balloons climbed up to the sky for Ashley.

The last few days have been very quiet at our house. We miss Ashley so much, but we also know that someday, we will all be together again. We are so thankful for the opportunity to love and care for such a beautiful and precious little girl. Ashley taught us so much about love, the important things in life, and most importantly, she brought us closer to God. We will never forget all the love and support our families and friends gave to us during Ashley’s journey. We are forever grateful to all the Krabbe families we have met and had contact with over the past year. We know that Ashley had a better quality of life because of all the things we learned from them. We will continue to keep in contact with these families and look forward to the next Hunter’s Hope Medical Symposium in July.

It is our hope that you will continue to check Ashley’s website. Over the next few months we plan to share many of our special memories and pictures of Ashley. Finally, we would like to thank everyone who has continued to follow Ashley’s journey and prayed for our family. Your prayers and support have meant more to us than you'll ever know. Thank You!!

Wednesday, October 10, 2001 at 02:21 PM (CDT)

Hello! It's hard to believe it's been over a month since our last update about Ashley. The past month has been a tough one on our emotions. We had some more difficulty with our insurance company last month. They denied coverage of any further physical therapy for Ashley. It was decided Ashley had not shown enough on-going progress and her therapy was no longer "medically necessary". After we submitted a written appeal, along with a letter from a therapist who has worked with another Krabbe child, the decision was overturned. Insurance has agreed to pay for Ashley's therapy through the end of the year and will review her case again at that time. (Never give in to an insurance company's denial without appealing. We have won two for two appeals so far.)

Ashley has been throwing up on a daily basis for the past month. Some days are worse than others. We have been fortunate so far that she has not aspirated and her lungs remain clear. Her breathing has been irregular for some time, but this is mostly as a result of the secretions in her upper airway. She sounds very raspy much of the time and has lots of horrible coughing spells. We routinely put her on her side and lightly pound on her back and her side to help loosen the build up of secretions that are causing the rattling. It breaks our hearts to hear Ashley cough so hard. Especially as the tears are streaming down her face. However, we are quickly reminded that she is lucky to still have a strong cough to bring up the thick secretions. If she was unable to cough, it would be far worse. It is very scary to see her turning colors as she struggles for an open airway. This has been happening much more often lately. It continues to amaze us how much we suction out each day. The secretions have been getting thicker and more challenging for Ashley. We have an appointment tomorrow with a pediatric pulmonologist to discuss how we may continue to keep Ashley as comfortable as possible as this horrible disease progresses.

Ashley has been on antibiotics for the past couple weeks. At her last doctor visit, we received a good report on her lung x-ray, but we made the decision to give her anitibiotics as a precaution since she has not been doing as well for the past few weeks. There are so many bad germs floating around this time of the year, so it's hard to say what bug she may have caught. For this reason, we are no longer taking Ashley to the in-home day care she has been going to since she was 12 weeks old. We are forever grateful to Pam Vitense and her family for their loving care of Ashley for the past 14 months. We are very lucky to have found a caregiver that was not afraid to learn about g-tube feedings and suction machines. Now that Ashley is home every day, we are struggling a little to work out our day to day schedules at our jobs. Both companies have been wonderful to us and have allowed us so much flexibility. However, we still need to have a fairly constant routine so they know when they can plan on us in the office. We have contacted the nursing agency that we have worked with since July and have requested more hours during the week. At this time, they are short staffed and unable to give us as many hours as we would like. Meanwhile, we have a wonderful neighbor across the road that has been very helpful, in addition to several family members helping care for Ashley.

Ashley is certainly not a baby anymore. She was 26 pounds, 13 ounces a few weeks ago and is starting to wear 24 month and 2T outfits. She had her first haircut in early September. It was a very memorable moment for us and we made quite a production out of it (2 cameras, a camcorder, and an audience.) She also got her finger nails polished again that day. (Thank you Sheila for the wonderful job you did on Ashley's hair and nails.)

Ashley has also been able to "stand up" like a big girl, too. We have a piece of equipment called a "stander", which allows Ashley to put weight on her legs in a somewhat standing position. She really seems to like it, especially because she gets to see the world from a different view. We have to limit her time in the stander as her body gets used to the change in position.

Ashley got a couple more teeth this past month also. She now has 6 teeth, with a couple more working their way in. It certainly gives her a different look.

We had our family portrait taken last month. We are happy with the pictures, but just wish Ashley's beautiful blue eyes had been open more. She slept well before we left for the appointment, but her eyes get very sleepy looking after she has been awake for more than a half hour. Her best photos of her eyes are right after she wakes up.

Another highlight of the past month was Ashley's visit to her Grandma & Grandpa Kayser's farm. Actually, it was more than a visit. She spent a couple days there while we took a trip away for the weekend. Ashley's Aunt Diane and Uncle Greg were celebrating their first wedding anniversary that weekend and our 10th wedding anniversary had been the previous weekend, so the four of us enjoyed a mini-vacation in Door County (Wisconsin). We are very thankful to Aunt Janet for doing all of Grandma's farm work so that Grandma could care for Ashley. A huge thank you goes to Grandma for taking such good care of our beautiful Ashley. We had a very nice trip and got some much needed sleep, too.

Sleep is one thing we really struggle with at our house. For some unknown reason, Ashley has gotten her days and nights mixed up lately. On average, she has been awake until 3:00 a.m. most nights in the past few weeks. Some of those nights, she tries to sleep, but the coughing keeps us awake. Other nights, she doesn't seem to be tired. Unfortunately, it is very difficult to keep her awake during the day. When she is tired, she sleeps!

Ashley lost one of her Krabbe friends last month. Gracie had lived only 15 miles from our house and was one month younger than Ashley. ^Gracie^ is one of Heaven's newest Angels and we are relieved to know that she is now free of Krabbe disease. We treasure the picture we have of Ashley and Gracie when they met in April.

Thinking about the month of October brings back a lot of awful memories. It has been one year since Ashley was first hospitalized and all the testing that followed for many weeks before she was diagnosed with Krabbe disease last November. It's so hard to believe a year has gone by already. While the past year has had lots of challenges, it has also had many special and very memorable moments. Our precious Ashley has continued to amaze us with her courage and her love. She is such a special little girl and we are so thankful she has touched so many other lives. Please continue to pray for Ashley's comfort.

As always, we have put a few new pictures in the photo album on this website. Be sure to check them out. Also, we look forward to reading any notes you leave for us in the guestbook. Thanks for keeping in touch with our family.

Love,
David, Cindy and Ashley

Sunday, August 19, 2001 at 08:00 PM (CDT)

Hello! We apologize for not updating Ashley's journal for a while. Ashley is now 15 months old and continues to grow well. She is approximately 26 pounds and 31 inches long, with lots of beautiful blondish, brown hair. After her baths, we like to roll her on her side to comb out her hair and admire all the beautiful wavy curls on the back of her head. She wears butterfly hair clips every day to help manage all of her hair on top. It won't be long and Ashley will need a haircut.

Ashley continues to have physical therapy twice per week where the focus is on range of motion exercises. She seldom cries during therapy anymore and has benefited so much. We have noticed Ashley lifting her arms up more often, moving her head from one side to the next, lifting her head up off the pillow, and attempting to roll over to a side position. She also seems to vocalize more all the time as if she is trying to talk to us. Although we know she will never be able to do much more, it is incredible to see her accomplish these simple things.

We love reading stories to Ashley because she seems to enjoy them so much. We will be shopping for some new books soon since we have almost finished two 300 page books of fairy tales and farm animal stories. Plus we have read all of her other books over and over quite a few times, so we need some new stories.

We took Ashley to the doctor a couple weeks ago because we feared she may have pneumonia. She had been running a mild fever off and on for a couple days and at times would have sweat beads on her face, but feel cool and clammy everywhere else. Also, she had been throwing up more frequently for a few weeks. Although her chest x-ray showed a couple suspicious areas on her lungs, the doctor did not feel she had pneumonia. She did have a little fluid in one ear, so we put her on antibiotics again as a precaution. One of our biggest fears is aspiration, followed by a severe pneumonia. This is what ends up taking so many Krabbe children to Heaven.

For the past couple months, Ashley has been sleeping with one of us in our bed. Quite often, she will vomit during the night and we want to be right there for her. We keep the lamp on all night and take turns with Ashley while the other sleeps in the spare bedroom.

For the past month, we have had some help from private duty nursing. During July and early August, we had a nurse one night per week to watch Ashley so we could get more sleep. We have tried three different night nurses and have only been satisfied with one. Unfortunately, the nurse we liked, prefers to work days instead of nights, so we have not had a night nurse for the past couple weeks. We have also had a nurse stay with Ashley on Sundays for about 5 hours so we can attend church, run errands and even go out for lunch. This has worked out very well and so far, we have had good luck with the Sunday nursing. Our hope is to have a few nurses become very familiar with Ashley so that when her level of care becomes more demanding, we don't need to bring in new nurses during a more critical time.

We have been very disappointed with the weather this summer. There have been so many hot and humid or rainy days, that we have not been able to take Ashley outide as much as we had hoped. She does not tolerate the hot, humid weather very well so we have spent a lot of time indoors. When it is nice outside, Ashley loves to go for stroller rides and sit on the deck swing. We were able to attend a family reunion a few weeks ago and Ashley enjoyed lounging on a lawn chair under a shade tree. Her Aunt Diane even put polish on her finger and toe nails. She looked beatiful with her adorable winnie the pooh sundress and her painted nails!

Yesterday, we took Ashley to visit her Grandma and Grandpa Cooper's farm. Because of the heat and humidity, we had not been there for a while so it was nice to visit. Ashley's Aunt Donna was also here for a visit and took pictures of Ashley outdoors with one of the baby kittens, some calves, and the cows. The other highlight of the weekend was Ashley sleeping from 11 p.m. until 7 a.m. this morning! She surprises us every once in a while by sleeping thru the night, but this is the latest she has ever slept.

We are so thankful Ashley has remained fairly healthy, all things considered. Thank you so much for continuing to follow Ashley's journey. Please pray for God to watch over Ashley and give us the strength and courage to care for her. Our precious Ashley means the world to us and we are so thankful for each and every day we have her with us.

Love, David, Cindy, and Ashley

Saturday, July 14, 2001 at 07:40 PM (CDT)

Hello! We would like to update everyone on what Ashley has been up to and how she is doing.

On Father's Day, David bought a lazyboy recliner chair for our family room and it soon became "Ashley's chair". She sits very comfortably in a reclining position and shares the chair with a lot of her stuffed animal friends. As a Father's Day gift to her daddy, Ashley slept through the night (10:30 p.m. to 6:15 a.m.). This was such a treat because it rarely happens at our house.

The end of June, we got Ashley's new "kid kart" stroller. It is a specialized stroller which provides all the support Ashley needs. We were so happy to get the stroller before our trip to the Hunter's Hope Medical Symposium in New York. Ashley is getting to be such an armful to carry around these days. She weighs almost 26 pounds and is about 30-31 inches long. According to the doctor's charts, she is in the 96th percentile for weight and the 60th percentile for height.

The day before our trip to New York, which was July 4th, Ashley had a fever and was coughing and throwing up more than she had been lately. We were so afraid our trip to New York would be cancelled. Since it was a holiday, Ashley's regular doctor was not on call so we had to explain Ashley's whole story to a new nurse and doctor. Ashley was now back on antibiotics for the third time in four months. After the doctor visit, we gave Ashley a bath and then put her in our bed to sleep. We had originally planned on going to a 4th of July parade and spending time with family for the holiday, but we decided Ashley needed to rest at home if there was any chance of us leaving for our trip the next morning. Ashley was obviously exhausted because she slept for SEVEN HOURS that afternoon!! We really worried about her because this was not her typical afternoon nap. We were pretty bummed out that day because we thought Ashley must really be sick to sleep that long. However, we decided that at least one of us would still go to the symposium in New York and the other would stay home with Ashley if she was not feeling better by morning. Naturally, we each thought the other should go to New York.

Early the next morning, Ashley woke up without a fever and very little coughing. She appeared very well rested. We thanked God for making Ashley feel better so all three of us could make the trip. We had to be at the airport at 6:00 a.m. so we were out the door pretty early. We were nervous about how well Ashley would do on the airplane since she can't suck on a pacifier or drink from a bottle anymore. Luckily, our flights went very well. Ashley was awake for most of the flight and was very content the whole time. What a relief to her mom and dad! During our trip, we noticed Ashley was getting her two front teeth. We were excited to see those teeth, but hoped they wouldn't create any problems on our trip.

We had a wonderful time in New York. We stayed at a conference center in Java Center (near Buffalo). It was a beautiful place away from the city with a lake, lots of trees and flowers, and a variety of recreational activities (tennis, bocce ball, hiking, etc.) The first evening, there was a welcome dinner at an outside pavillion near the lake. We met many families and shared stories about our children. Ashley even met Jim Kelly (ex-Buffalo Bills quarterback) who along with his wife, Jill, created the Hunter's Hope Foundation four years ago after their son, Hunter, was diagnosed with Krabbe disease. At four years of age, Hunter continues to fight this awful disease. Hunter's Hope Foundation has been very instrumental in providing research grants for Krabbe disease and other Leukodystrophies. One of our favorite moments that evening was when Jim Kelly told Ashley she had beautiful eyes. Ashley then opened her eyes as big as she could. She loved the compliment! During the next two days of the conference, there were sessions on therapy, cord blood and bone marrow transplants, pre-natal screening, and a review of about a dozen current research projects being funded by Hunter's Hope. David also participated in a bocce ball tournament one evening. Ashley attended many, but not all of the sessions. She did very well most of the time, but did have a couple bad coughing spells two of the three days we were there. We are so glad we made the trip and had the opportunity to meet so many wonderful families who currently have or have had children with Krabbe disease.

Our trip home went well until we got to the O'Hare airport. Ashley had fallen asleep shortly before we landed, but then woke up when the pilot landed the plane a bit rough. She started coughing and crying and continued for most of the 15 minutes we sat on the runway waiting for an open gate. After a two hour layover, we found out our flight home to Madison had been cancelled due to a mechanical problem. To make things even worse, all other flights going to Madison were overbooked. We insisted that staying at the hotel and flying home the next morning was not an option because we needed to get Ashley home. The next three hours were spent standing in lines with other stranded passengers, determining how United Airlines was going to get us home that evening. We finally convinced the customer service supervisor to give us a refund on part of our tickets. We then rented a car and drove home. At 2:30 a.m., we crawled into bed, thankful to be home at last!

Ashley slept a majority of the next two days. It's too bad her mommy and daddy couldn't do the same! We were very proud of her because we spent way too many hours in the airport and she was such a trooper the whole time.

We are so thankful for your prayers and support. It makes each day a little easier. We have learned to take one day at a time and try hard to enjoy every day we have with our precious Ashley. We pray that all parents will love their children unconditionally and make each and every day special.

God Bless You and your family.
Love,
David, Cindy and Ashley

Wednesday, June 13, 2001 at 07:05 PM (CDT)

Here is a summary of Ashley's journey since our last message. Mother's Day was not a great day for Ashley unfortunately - lots of coughing and a tough time sleeping. The day after we took her to see her pediatrician and found out Ashley had an ear infection, so back on the antibiotics she went. So far, it seems like we can tell based on the severity of her coughing if we are dealing with a cold or ear infection. We also went to see a doctor in pediatric pulmonology that week. We were concerned that supplemental oxygen may be needed soon so we did a three day study of Ashley's oxygen levels. She was hooked up to a machine which monitored her oxygen saturation level and heart rate. It appeared that her levels were fine most of the time, but it certainly can make you crazy watching the monitor go up and down at times.

We just found out that she does not need any supplemental oxygen at this time, which is good news. Mean while, the coughing has gotten a little better, but Ashley continues to have a lot of gastro reflux which appears to be a big reason for all of her coughing. We have had some really scary episodes in the last month where she has struggled for air because of the volume of reflux. Thank goodness for a portable suction machine which atleast helps control some of the refluxing episodes. Ashley has started to sound pretty "raspy" due to all the secretions in her upper airway that are difficult to cough up. We have different positioning techniques to help eliminate some of the problem, but some days seem to be worst than others. For the most part, she has been doing pretty well.

When the weather cooperates, we like to take Ashley out on the deck and sit on the swing. She seems to enjoy the sun and breeze on her face and the motion of the swing. Last Saturday, her daddy and friend Emily sat in her new swimming pool that she got for her birthday. She cried some, but also seemed to like it at times. At the doctor's office last week, Ashley tipped the scales at 24 lbs 8 ozs. She is getting to be quite an armful to carry. We have a specialized stroller called a "kid kart" on order. We are hopeful it will arrive before we attend the Hunter's Hope Symposium in New York next month. The Hunter's Hope Foundation has been funding the research into Krabbes disease and other leukodystrophies. The founders, Jim & Jill Kelly's son Hunter is also battling this disease.

Ashley continues to go to sleep around 11:30pm and wakes up coughing about 3:30 - 4:30am. Lately, she has been coughing more between this time, so trips to her room have become more frequent. After a couple of hours, she will usually go back to sleep. We usually catch another hour at that time, but I think during her time awake, we usually are in and out - cat naps I guess we call them. Ashley loves to have her hair brushed which has gotten really long. It is very curly on the end and now can hold a barrette. She also seems to really enjoy having books read to her, so he try to read as often as we can.

Each day Ashley continues to amaze us. Usually it is the simple things like a glance up with her eyes when we kiss her forehead or raising her head slightly when she wants to turn it to the other side. She also enjoys laying on her side and having her hair stroked. It is hard to explain the struggle she must face everyday, but her eyes are filled with so much love which makes each day a bit easier for us. She is truly teaching us a life lesson - how to live and love each day. Thank you for your continued prayers for our family and love for Ashley. We have enjoyed your guest book entries and make it a part of each days routine to check in. We hope you enjoy the recent addition of photos. God bless you and your families.

Saturday, May 12, 2001 at 02:12 PM (CDT)

Thank you to everyone who has visited this site and those that are new visitors. We are so thankful for the continued prayers and support we have received as we continue with Ashley's journey. We apologize for the delay in getting her journal updated. There never seems to be enough hours in a day.

As I write this journal entry (while feeding Ashley), Ashley is taking a "power nap" on the couch. She had a wonderful, relaxing bath at noon and typically naps for a couple hours after her bath.

Ashley continues to be about the same. We thought she had pneumonia again a couple weeks ago, but the doctors believe the xray only indicated areas of the lungs that are not getting sufficient oxygen due to all the secretions in her upper airway. She continues to struggle with a lot of coughing. Thank goodness for a portable suction machine that is essentially part of the scenery everywhere we go.

Ashley has enjoyed some recent stroller rides around the neighborhood during the beautiful spring days. She really seems to enjoy the outdoor lights, sounds, and the cool breeze.

We have established a regular routine every evening where Ashley gets to spend time in mommy and daddy's "big bed" before going to her crib. Quite often, daddy finds Ashley asleep with mommy curled up next to her (a picture that is priceless). Ashley usually wakes up between 3:00 a.m. and 5:00 a.m. with a bad coughing spell. Then she gets to go back into the "big bed" and typically goes back to sleep an hour or two later. We take turns every morning so that one of us can get some more sleep in the spare bedroom.

As difficult as it is to not see Ashley reach developmental milestones, we find comfort knowing she is still aware of her surroundings. Mommy enjoys helping Ashley sit up "like a big girl" and at times, we truly believe she understands this and attempts to sit up. Ashley continues to get physical therapy twice a week and still cries through most of the session. Her therapist, Becky, bless her heart, continues with each session and makes Ashley complete the routine. The range of motion exercises are very important to keep Ashley limber. One day, Ashley started crying as soon as Becky walked into the room and started talking. She obviously recognizes other voices besides her mommy and daddy. During the next couple therapy sessions, Becky came into the house quietly and did therapy with Ashley without saying a word. Ashley didn't fuss much at all on those days. We certainly got some laughs over this because Ashley knew what it meant when she heard Becky's voice.

The end of April, Ashley spent the weekend with Grandma and Grandpa Kayser (Cindy's parents). Mommy and daddy went to St. Louis to visit David's sister, Donna and her husband, Jim. We also stopped to visit another Krabbe family that lives in St. Louis. We had a wonderful visit and are thankful that Cindy's sister, Diane helped with the farm work so Grandma could take care of Ashley.

Last Saturday, May 5th, we celebrated Ashley's first birthday. We had a great party for Ashley with family and friends. Of course we had Winnie the Pooh and Tigger plates, napkins, balloons, hats and even an ice cream cake. Ashley is all set for the summer with lots of adorable outfits, really nice musical toys and even a swimming pool. We also planted a beautiful white flowering crab tree in honor of her birthday.

This past week, we have been watching Ashley's first two teeth come in. We thought they were getting close to coming in a few months ago, but now they are out and so far don't seem to be bothering her.

As Ashley's journey continues, some days seem better than others. It is hard to see her struggle with her cough and we wish we could do more to comfort her. Her birthday, special moments in the "big bed", and sitting up "like a big girl" are all memories we will keep close to our heart. We recently put together Ashley's photo album and have over 400 pictures to date. We have included some of our favorites in the web page photo album this time.

We appreciate your continued prayers for our family. Our "little princess" makes each day special and we treasure every day we have with her.

David, Cindy, and Ashley

Sunday, April 15, 2001 at 07:11 PM (CDT)

Ashley's page has just been created. Check out a recent photo in the photo album.

Ashley has been doing well lately after recovering from her first case of pnuemonia and double ear infection a few weeks ago. Last Sunday, Ashley enjoyed the outdoors and sunshine for the first time this year. We are looking forward to the summer as we believe Ashley will enjoy being outside. We had a cookout with a couple of Wisconsin krabbe families, swapping stories and learning more about everday routines. We look forward to celebrating Ashley's 1st birthday soon.

She is now 22 pounds with chubby legs & arms and starting to wear 18 month outfits. Everyone comments on how much beautiful light brown hair she has. We can no longer call her our "little peanut" and have decided that "little princess" is more appropriate. Mom also likes to call her "sunshine" and "beautiful girl".

Ashley is now getting physical therapy twice a week in which she does range of motion exercises that help keep her nerves active. Although she does not enjoy the sessions, they are certainly making a difference in her flexability. She has been able to move her arms, legs, and head more since the therapy began. This has been great to see.

Ashley continues to go to a wonderful home daycare about 6 hours a day. This has allowed us to continue getting hours in at work and give us a break. They have been wonderful in her care and have been so supportive during Ashley's journey.

We will try to update this page every couple weeks and provide the latest pictures of our princess. We are blessed everyday we spend with Ashley. Thank you for your prayers and continued support.

Click here to go back to the main page.

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