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Saturday, October 29, 2005 8:10 PM CDT
Sorry for the delay in posting, I am lost for words lately.
Things have been going well. Ashleigh's secretions and oxygen requirement have improved. She has been awake and more alert. Wide eyes and giving her beautiful smile. She is doing so well that we are going to make an appointment for her to have her new port placed. Last Friday, she had blood work done in the lab, they couldn't find a vein so they did a finger prick. Well, her plateletts came back as 37,000 (normal is 150,000 to 450,000) so we had to return to the hospital and a repeat blood test and possible transfusion. I was extremely concerned because her last transfusion was two years ago, two months post transplant. With all the issues she was having, I thought for sure she was going to have an infection in her blood and end up in ICU. Well, they couldn't get a vein so the doctor had to come in and put a A-line in. They got the blood and pulled it out, because it was going to blow anyway. I requested they do a chem screen because her veins were so bad and she was not tolerating her feeds so I thought she may be dehydrated. Everything came back fine. We were getting ready to leave and she had a breathing episode, enough that they got out the equipment to bag her. I think everyone was preparing for her to code, but she was fine within a few minutes. My friend, Colleen came to the hospital to sit with me. It was a long night and I was glad to have her with me. Thank you, Colleen
Ashleigh has been very whiney and fussy. She was bad all day one day so I put her on the phone with Howard, she stopped, listened to him, smiled a bit and relaxed...enough to take a great nap. She misses him so much.
Mackenzie and I both have colds. Mackenzie asked to go to bed tonight at 8 and fell right to sleep. She is in a horse show tomorrow so I hope it clears up and she is better after a good night sleep.
We had Ashleigh's fundraiser this past week. It went great. There are so many people that I would like to thank for the kindness to our family but really don't know were to start and I am afraid of leaving out some terrific people. Gill's Landscaping, the entire New Jersey National Guard, Family, Friends, Ashleigh's medical team and therapist local businesses...it has been absolutely overwhelming. I could never thank these people enough for their kindness.
Nothing has changed with Ashleigh's medications, we are hoping to start aquatic therapy back up as soon as we have the port in. Now that Ashleigh is doing well, I hope to get her out for a few bike rides in her fancy new therapy bike.
Howard will be home for Christmas, I am so excited to see him. I didn't really prepare myself for how hard it would be without him. I kind of set it in my head that it was for a couple of weeks, we have done that before...now with him gone, reality set in and I wish so much I could see him.
I bought Mackenzie her first Christmas present, tickets to Beauty and the Beast in Philadelphia. Very excited. I am going to plan Mackenzie's birthday party this week, I am looking for some way special for Ashleigh to celebrate her day. It is hard to believe that Mackenzie will be 6 and Ashleigh will be 3 in a couple of weeks. There is so much I want for Ashleigh, sadly, none of it can be bought.
Thank you for your continued support and prayers for Ashleigh and our family. Good-Night.
Sorry, I never explained the platelets, they were fine, because the blood was taken from a finger prick the cells were damaged during collection. They were 425,000 when we went back that night.
Yes, Trish, there is nothing like a good friend and Colleen has been that for me since we accidently met while are daughters were in therapy at the same time. Her daughter, Amanda needs open heart surgery, so could you please add her to your prayers, also ask for answers to an exact diagnoses for this cutie.
Thank you, Shar for you kind words in the guessbook.
Monday, October 17, 2005 9:34 AM CDT
I have come here several times to update, and I am just not sure what to say.
Ashleigh is having a terrible time. She was on oxygen most of last week, requiring a lot of suctioning. I gave her breathing treatments and chest PT to clear her out. Saturday she had a great day, smiling and laughing, but Saturday night she cried until about 4 am, I sedated her and we slept some. Sunday morning I was getting dressed and I heard the most beautiful sound...Ashleigh was yelling "Ma", I was so excited to hear it...I went running into her room and sadly she was not yelling for me, she was having a very bad seizure. I don't know what the new noise was from it but her eyes were rolled and her head was shaking, arms stiff and twitching...It was bad, horrible. Out of everyhing she goes through, the seizures are one of the hardest to see. The rest of the day...she cried. I sedated her sometime in the night and we slept on the couch. Saturday, she did light up when she heard her daddy's voice on the phone.
As most of you know, Howard left Thurday for training for the Middle East. If anyone would like to email him or mail him a card, please email me and I will forward you his address. I can not publish it here for securtiy reasons.
Thursday was hard, I lost my best friend for the next 1 1/2 years. He was so sad, saying good bye to the girls, his eyes filled with tears. Mackenzie begged him not to go, she begged me not to take him. There was a picture of Mackenzie and Howard in the local paper, Mackenzie crying, Howard trying not too. It was in Friday's Courier Post. www.courierpostonline.com
We rented movies and made home made pizza, baked some cookies and just snuggled alot this weekend. I think all three of us needed it. I feel lost, I can't imagine how my two sweet girls are feeling.
I dropped Mackenzie off at horseback riding yesterday. She is going to be in a horse show the end of the month. She is also joining the 4H, they meet every other Monday. I was going to put her in Girl Scouts (Daisies) but there is not a troop close to us.
Howard's mom stopped working so she can help me with the girls, and odds and ends. I don't know if I could manage everything if she did not. Thank God she was able to do it.
The 3rd Annual Ashleigh Ryann Gwin Fundraiser is coming up.
It is October 27th at 7PM at Adelphia's in Deptford. There will be a chinese auction and silent auction. Tickets are $25. If anyone is interested please email or call me for tickets. We could also use some baskets for the chinese auction. So if you would like to donate something or know a business who would please let me know. Please pass the word on, we hope to make this a huge success...
Thank you so much for your support, generosity, and prayers through these past 2 1/2 years of Ashleigh's illness and most recent events in our family. Thank you, Thank you, Thank you!
Sunday, October 9, 2005 1:58 PM CDT
Ashleigh has been full of energy. She is moving more, laughing more, and full of smiles. She has really been working hard in all of her therapies. I will do a complete update on our schedule and her medications next week.
Last night she had a tough time, requiring oxygen the entire night. We are not sure what is causing these episodes, it may be Krabbe but we are going to talk to Dr. K about ruling out a few possiblities.
Mackenzie is doing wonderful in school. She was invited to her first school friend birthday party. She was so excited to come home with the invitation. She has been having so much fun, making new friends and learning incredible things. Howard took her to Build a Bear to build a army bear, he is going to record his voice in the sound maker and whenever she misses him, she can hug her bear.
As for Howard, he leaves for Mississippi in 4 days. He doesn't say much about it. I am okay, emotional at times and okay others. Howard believes in what he is doing, we need to respect it, not make it to be so negative. As his wife, I will not subject him or our children to the reality of the danger he will be in. He, of course is aware...he don't need me, a civilian, newswatcher to tell him. I too am very aware of it...it constantly haunts me...we had to talk about his funeral, living will and the future of our children...responsibilities that will lay solely on me.
Thursday, is a send off party, I am hoping to spend time with him but the way things are looking, it won't happen. We are trying to figure it out...time for us to just be a family.
Wednesday, September 28, 2005 4:05 AM CDT
Good Morning....
Monday, Ashleigh went to the orthopedic. I wish I could say things went great, but they didn't. Ashleigh's hips are 50 percent "out". Dr. Dabney ordered her a brace to wear at night and said we need to see improvement starting to show in 6-9 months. If we do not see anything within a year, she will have to have surgery to fix her hips. This will require her to be in a cast for 6-9 months after the surgery. He said the cast will go from her just below her rib cage to her feet for the first 3 months, because he would also release her tight hamstrings, then it would be to her knees. I am very upset with the idea of this...
Whenever we feel like we missed bump in the road, we sink into it...Ashleigh didn't have seizures until way after transplant, the hips, infections (none until 18 months post transplant). Just would love a break for her, yet feel so blessed that she did miss many of the detours in this journey and we still have her with us.
Tuesday, her therapist couldn't make it and Ashleigh had a nice relaxing day. She slept most of the day because she is up all night. It is 5 am here, and she still has not slept tonight. So, she will be tired tomorrow in her feeding therapy.
I went to a military family briefing for some guys that are deploying to Iraq. I work on the Family Support so I went to offer help to the families and meet with our commander. It is strange to think that I would be doing this for myself in two weeks. Everyone was very nice to me tonight. Several men who are not deploying came up to me and told me they would take care of me and my girls while Howard is deployed, that our military family will step up and help us. One man told me that they already have a plan in place in case of an emergency, to get Howard home. Someone else told me that Howard should file for a hardship. I know that would look like the answer, but he can't. He is going with a good commander and a good 1SGT. He is going as second in command...if he has to go he is not in a bad position. He trust these men and therefore, so do I. God will be with him as He has been with my daughter for the past 2 1/2 years. As much as I tell myself this stuff, it doesn't always work...I am scared to death of loosing both of them at the same time, yet find peace that they would be together. I am afraid of doing Ashleigh care by myself and making the wrong decision for her or messing up something. I am afraid of the Mackenzie's fears and her not understanding. I fear not cooking dinner for anyone or the silence in the house after the girls go to bed. I fear being alone. Yet, I feel selfish, because I will have my girls, my home, my bed. Howard will be in a "sand box" for a year with none of the luxury that I would have...the smell of our girls, their voices, their questions, hugs and smiles. I am blessed to have those things and a husband who loves them, me and our country.
Today...Howard will take Ashleigh to therapy and I am taking Mackenzie on her first class trip...apple picking. Yum...I know after we get back I am going to do want to do some baking. Just the smell of the apples...I love the fall! My favorite time of year, how beautiful the trees are, the smell in the air...pumpkins and apples...decorations, the cool weather...Life is a beautiful gift, each day a blessing.
Friday, September 23, 2005 10:38 PM CDT
Not much to report...
Wednesday Ashleigh had her stitch removed. It looks good, barely a mark. She also had feeding therapy.
Today we picked up her back brace, this will help her sit straight, so we can avoid damage to her spine. She did well in it today, we will slowly increase her to wear it all day. Another day of therapy...
When we returned home today, the insurance company called they approved Ashleigh for a new wheelchair. She is going to get a big girl chair. It is very exciting, the kidcart (wheelchair and stroller together) is not supporting Ashleigh and she is getting too big for it. The denied her bath seat, saying it was not medically necessary, so I asked if they would prefer for her to be dirty and get infections they need to treat or would they like her to drowned in the tub because she is too big to hold and wash and she does not have the ability to hold herself up. Alice was very nice and she said she is going to work on it farther.
We are also going to try to get in surgery so we can get her port and start her back on IVIG. She is also going to get monthly shots to protect her against RSV. The shots are not a vaccine, they are an immune builder so it is save for her to get them with the FK506.
Tonight, I was watching tv (which I hardly do) and I thought I would share a story with you...
When Ashleigh was being diagnosed, one night I was sitting up watching tv at the hospital and the nurse came in to see what I was watching. She said that the doctor called (Dr. Renwick) and wanted to make sure I wasn't watching Law and Order: Special Victims Unit. Well, I was...they requested I not watch it but it was too late...It was about a mother, who gave her baby high doses of a sedative and killed her. The baby was diagnosed with Tay Sachs. At the time, it was one of the diseases they were checking Ashleigh for. It is a lysosomal storage disease, just as Krabbe. I sat and cried. Well, tonight the rerun of that episode was on...it brought back so many memories of diagnoses. Our room-mate Billy,who is now an angel. Eating tons of Krispie Kreme donuts, thinking this wasn't what my baby had, she just needed higher calorie formula for more energy, she just had a virus in her spine that needed antibiotics...anything except a death sentence. I remember our nurse, Debbie, coming in all night to see if I needed anything, letting me cry and ask questions, the smell of the hospital, the horrible colors in the rooms. The crying babies. It is hard to believe that it has been 2 years, 4 months, 11 days since we got the final diagnoses.
I have come here so many times to ask for prayer, for Ashleigh and other children. Tonight I ask that you flood Heaven's gates with prayers for a special little girl. Maddie Trimper is in of alot of prayers, for she was being airlifted to Duke yesterday. Please, please, offer her family the same wonderful support you have always given us. The Trimper family has become very dear to me and I could not tell you how much they mean to me...talking with Jane always relaxes me. I was lucky enough to go to lunch with her when I was at Duke in August and then go to their apartment to see Maddie. I always enjoyed seeing them at clinic when we were there. The family is an inspiration to many...please lets give them what they have given so many...HOPE.
caringbridge.org/mi/trimpermld
Friday, September 16, 2005 7:58 AM CDT
Ashleigh went to the dermatologist appointment on Wednesday. She was very nice, I really liked her...very kind to Ashleigh. The two spots of breakdown skin that is graft vs. host. We treated it with bactroban and protopic (bactroban because it was open and raw skin). She said to talk to Dr. Kurtzberg about it. Of course, I talk to Dr. K about all of our appointments so she said to increase her FK506. Ashleigh is back on her dose of 18 months ago. The same dose as she was when we left Duke the first time! FK506 lowers the immune system. Ashleigh is back on restrictions and can not receive vaccines until she is off of it completely!
The bumps on her arms...she has had these since February. They thought they were ingrown hair. Then in July the started to look infected. The cultured them twice, nothing grew. They are common with the infection she just had but nothing connected them. So...we biopsied one. I hated the idea of her having another skin biopsy done, but we have been playing with these things too long and she couldn't have surgery until we ruled them out for bacteria. We should get the results in a week or two.
Ashleigh had a wonderful therapy session with Sarah and Steph on Wednesday. Sarah asked who has been working with her mouth...her mommy and daddy, but she is my child so of course her mouth can move! She sucked and ate a lollypop. Steph was pleased with how loose her arms were.
Yesterday, Howard took her to see Dr. Renwick, Ashleigh is a little stuffy, so she might be getting a slight cold. We will have to watch it close to make sure we keep her lungs clear. Ashleigh was also fitted for her soft back brace. This will help her sit better and support her back muscles. It will also help keep her spine from curving.
Today we are going to stay home. Mackenzie wants to play with mommy after school. We were going to go to a movie in the park that our town was having, but the weather is not nice so I am sure it is cancelled.
I AM THE CHILD
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be
laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world's standards --
great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead
opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your
abilities;
the opportunity to explore your spirit more deeply than you imagined
possible.
I drive you further than you would ever go on your own, working
harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and
play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've
dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring
stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a
more complicated life.
My gift to you is to grant you the freedom to enjoy things as a
child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking
things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
Monday, September 12, 2005 1:41 PM CDT
I am sorry for the lack of updates. I really don't know what to say from here...
We are waiting to find out what to do for Ashleigh, most likely, we sit and wait. Wait for another MRI.
She is doing well...except for an unexplained rash. We are waiting for a Derm. appointment. If we can't get one here, we are heading to Duke because we can't go to surgery for a new port until we know what is going on with her skin because of cross infection.
We took a weekend trip to Hershey, Mackenzie was very daring getting on a roller coaster and so very fast spinning rides. Ashleigh was enjoying the fresh air. The chocolate factory was very kind to Ashleigh, giving us a V.I.P. tour.
I found this and wanted to share it with you, especially all of you who travel this road.
Becoming a special needs parent changes everything
When you learn that your child has a complex medical condition or
special needs, your world is turned upside down.
The hopes and dreams and normal expectations you have on
parenthood now shift to a very different reality.
You are as different from other people as your child is.
You realize that sometimes things just do not happen as you
planned.
Instead of deciding what comforters would go with your decorated
theme at the "Baby Store"
Your decisions are now how to fit in medical equipment like oxygen
tanks and machines next to the stuffed animals you received at the
baby shower.
Your baby's drawers not only have cute colored socks and T-shirts.
They also have non latex powder free gloves, syringes and other
medical supplies.
The Lullaby Tapes you play for your baby in hopes of creating a soft
serene environment for your child are now drowned out by the alarms
and beeps of the equipment that monitors your child's vital signs.
Well baby check ups will not be at set intervals of stages in your
babies growth.
You will see your child's doctor more often than some of your family
members and the pharmacist at the local drugstore will know you by
name.
You no longer have the choice of screening potential baby sitters, to
make sure that your child care is to your comfort level.
You sometimes have to accept whoever the home health agency can
send your way, although licensed in nursing and capable as they are,
you just no longer have the choice anymore.
Instead of sleepless nights for the first year until your child outgrows
the bottle.
You start to forget the meaning of the word sleep and your coffee pot
is constantly on.
Life as a special needs parent is different from most people, but
there are differences that other people will never know.
You are witnessing a miracle each day...
When you see your child's little legs trembling as he tries to stand,
with all his strength however little it is because he feels the floor under
his feet.
When you look down at him, you see he has this huge proud grin on
his face like he is conquering the world, he is isn't he?
When they tell you that your child will never do much or amount to
anything, yet you feel your baby hug you for the first time. Or after
hundreds of times that you press your face against his lips you hear
him smooch you a kiss.
When your child reaches out and pets your dog, or smiles when he is
kissed by his sister or laughs at the most ridiculous things, but he
laughs.
Like the joy of seeing your child take steps to walk for the first time
when for years you thought this was not in your child's future.
You start to realize that all the sacrifices you have made, the
sleepless nights, the mom or dad hours you put in learning therapy
and skills of nurses.
The roles you have played as advocate, nurturer, protector, chauffeur
and parent really pay off when you see your child's face light up just
at hearing your voice or resting in your arms.
That light in his eyes telling you that your child knows without a doubt
that he is loved.
You appreciate the little things and remember...that today is the only
day that you are guaranteed and the present moment is all that
matters.
Saturday, August 27, 2005 8:19 AM CDT
Two years ago today, at 11:00 am, a bag of blood was brought to Ashleigh's room on the bone marrow unit at Duke, room 5209. It was blessed by the minister, kissed by each of us...Mackenzie, mommy and daddy, hung on the pole by Nurse Jen G. By 1:00 pure hope was in Ashleigh's body.
I had a beautiful post prepared for today, about how much I wanted to thank the mother who donated her cord blood, how much Dr. Kurtzberg, Sue, Dr. Renwick mean to us. How 23 children have died from a leukodystrophy (and that is only the ones I know about) since Ashleigh's diagnoses. How much HOPE we have for Ashleigh's future.
Instead I ask that you pray, please pray for my sweet baby as you have over the past two years. Our fear for the MRI was confirmed. Ashleigh has a small amount of disease progression in one area of her brain. We are waiting for a meeting with Dr. Kurtzberg to find out what that means for Ashleigh and how it is possible if she has her enzyme, which blood test say she does.
Regardless of what happens now, we are thankful for transplant, all of her doctors and we continue to carry HOPE in our hearts. We will explore other options and continue to fight for Ashleigh's precious life. In the end, we know it is God who has the control, so we beg you to pray for more myelin for Ashleigh. This is the first MRI that has shown disease progression since her first one done at DuPont during diagnoses. We pray that it is somethng that can be corrected and Ashleigh will continue to be with us here on earth. If not, we pray that she is at peace and pain free for whatever time we have her.
This is not the post I planned on sharing with you. We did not prepare ourselves for this at all. I have looked into my dieing childs face everyday for the past two years and I thought that one day that would end. I thought I could look at her and say...you are healed, it is over, you survived. I know that Ashleigh will always be terminal and the only thing I can do is pray and hope that day never comes.
During all of this, we also found out that Ashleigh has a bacteria ( 4 Aeromonas veronii biovar veronii) in her stools. She has to go to the hospital everday and get two injections in her legs for the next week.
I am sorry this post is do dreary, our day of celebration still is just that, we celebrate Ashleigh's life and strength, but it has become a day of tears for the uncertain furture that she has come to face once again.
I will never regret our choice to transplant. Her transplant gave her smiles, laughs, looser muscles. I look at her and she knows what I am saying, she interacts with books and toys. Dr. Kurtzberg gave us more than what Krabbe would have. No, it was not what we hoped for, but that can only come from God. If knowing what I know today, we were faced with the same situation, my answer would be yes...transplant Ashleigh...take that monster of a disease away from her. She is not expected to suffer the disease. Most likely, she will go to sleep and never wake up. Again, this is all uncertain, we do not know for sure this is her future...we are just facing some terrible news right now. I will update you all as we have more information. We are asking for many prayers for Ashleigh...
Thank you for all that you have done for our family, especially your prayers for Ashleigh.
Wednesday, August 24, 2005 6:51 PM CDT
Do you know that saying "when it rains, it pours"...that is our past two weeks.
Sunday night, Ashleigh was up all night, she was crying and fussing. As she started to calm down she had three very loud screams in a row. I am guessing that they were seizure related. Monday, on our way to the doctor. Asheigh's feeding pump (still on since thursday) alarmed and Ashleigh let out a noise. I turned to see if she was okay and I hit another car. We were all okay. The man that I hit was extremely kind. The police called an ambulance for Ashleigh to checked up. Howard's mom came and took us to the hospital for Ashleigh to get checked out. We saw Dr. Renwick and she sent us for some test. Ashleigh x-rays were okay, her blood was okay, they tried to get urine from her but they couldn't get it. We put a bag on her and I was going to take it in when we got it. Her stools, blood and secretions were all sent for cultures, because of the issues that she had before the accident...fevers, retching and crying.
At home we were still waiting for some urine...we waited all day. After dinner, I called Dr. Renwick and told her that Ashleigh didn't have urine yet. We talked a couple of times and then headed back to the hospital. We got there about 8 o'clock, we left at 2:30 in the morning. They gave Ashleigh fluid and did some blood work. They talked about admitting her but her blood work came back better then they expected. They did get urine from Ashleigh, it came back fine. So they don't know what caused it. They think she may virus but it wouldn't explain the lack of urine. Two people commented on her cheeks looking larger, like she is back on steriods, one being a doctor, the other her therapist. She has many issues that we can't explain.
Today, someone told me that Howard was selfish to leave us when Ashleigh is so sick. He is not leaving for a vacation, he is going to war. I have recieved many emails from other families of sick children, that are also military, saying that Howard could be excused from duty because he has a terminal child. This is a choice that he has made, I, as his wife support his choice. I ask that the people who love us also support him. I am sorry if this sounds harsh but it really upset me when I heard that. I don't want people to feel that way. He is an awesome father and loves his children with all of his heart. I could not be more proud of him...a wonderful husband, dedicated soldier and an amazing father.
God Bless.
Saturday, August 20, 2005 7:52 PM CDT
UPDATE 2:02 EST
There are many children that I have come to love. It doesn't matter if I see them in the therapy at duPont, in the halls of Duke, through caringbridge, message boards or at the Hunter's Hope symposium. Four of these children have died this month. Four children that will never get to graduate school, go to a prom, get married or have babies of their own. Children that missed out on a future because of disease. Eight parents sitting with empty arms and holes in their hearts that nothing could ever fill. This morning I beg you to pray for another one of our dear friends. Below is a post from Queen Maddie's website.
I am writing an update tonight to ask you all to be praying in agreement with us. We are praying and believing that our Almighty God will heal Maddy. Tomorrow at 3:00pm Eastern Standard Time, 2:00pm Central Standard Time, and 12:00pm Pacific Standard Time we will be praying for God to fulfill His promises and do her no harm but give her life.
Please friends!!! Pray with us. I know that our God can heal her. I know and believe He has great plans for her on earth. If you live close to Duke University Hospital and God lays it on your heart to join us in the PICU for prayer please do.
Thank you for all your unending prayers for our little girl. I believe He is waiting to give us this miracle!!!
**************************************
I am sorry, but there still is no word on Ashleigh's MRI. I read the report over and over saying that it can not be true...how could it. She has donor cells, she as enzyme, she is gaining so many skill. Yet, I fear so much that her disease is progressing.
Ashleigh has had a tough week. She has required suctioning and oxygen. She has had a fever on and off for a few days, whining and diarhea. She is now on a feeding pump 24 hours a day, just to keep her dehydrating. She was getting pedialyte, then half of pedialyte/half formula. This is her first time on full strength formula in days.
On a good note, I finally got control of her skin GvHD and the rash around her g-tube. I have been using 3 creams, 4 times a day. I changed the g-tube button back to the size that she has always been. A few months ago, they changed her size to a smaller size. When we were at Duke, they thought that it was too tight. Well, since I changed it her rash is better and it looks much better.
That is really all that is new in Ashleigh's world. We patiently wait for the MRI results, praying that they bring good news!
I have asked you to pray for many of our friends in the past. Sadly, we have lost two more. Our friend Cody, earned his wings. He fought so hard. Cody had a six year battle with leukemia. He will be dearly missed in the waiting room at Duke. Love and miss you, buddy.
Maddie Heflin, passed way yesterday morning from complications of Krabbe Disease. She was 4 years old. Dance, sweet princess.
Please keep these sweet angels in your prayers along with Julia and Hunter who also recently earned their wings.
caringbridge.org/va/cody
caringbridge.org/ky/maddieheflin
Also, Queen Maddy is still in need of prayers in PICU at Duke. Please pray for this sweet girl and offer her family support by signing their guessbook. caringbridge.org/ca/queenmaddy.
Oh, and feel free to let us know that you stopped by... ;-)
Wednesday, August 17, 2005 2:37 AM CDT
I am so very sorry that it has taken so long to update.
We returned home from Duke on thursday. We painted Ashleigh incredible therapy room and have been busy, busy, busy ever since.
Ashleigh is doing well. We are still waiting for the results of the MRI. Dr. K thinks it will be okay, she will let me know as soon as she gets the results.
The eeg actually did show some improvement on the left side of her brain. She still has very messy brain activity.
We are also still waiting for her donor count and her immune functions. We did in increase Ashleigh's FK506, which lowers her immune functions.
We did not take Ashleigh to surgery. Dr. K felt that there was a bacteria in her body somewhere and we had to treat that first. In another month we will have a new port placed and we will restart Ashleigh's IVIG to help protect her from getting sick. We are also going to start her on the RSV shots for this winter.
That is all that is going on in Ashleigh's world.
We talked with Dr. Kurtzberg about Howard deploying and she felt it would not be good for Ashleigh. She reminded us that even though Ashleigh received the transplant, it was experimental and it was a treatment not a cure. Ashleigh is still terminal. It was hard to hear, reminder of how terrible this is for Ashleigh.
I went to lunch with another mom who transplanted her 3 children...we had a great time talking about our babies. I was in a very low spot at the time...a couple of Krabbe kids had passed away and we found out that Howard was going to Iraq...I was in a very dark blue place. I said that did believe that Ashleigh would die and she didn't have time for a future. I don't believe that and I am very disappointed in my saying that. I do believe that Ashleigh will be healed. I believe God will give out medical community the knowledge to improve Ashleigh quality of life and we will one day hear her talk and see her walk and one day we will have complete healing!
I have asked you to keeps alot of our friends in your prayers, tonight I ask for you to pray for one of our dear friends. Cody transplanted and was at Duke with us. Cody is on a vent with his setting as high as they can co and his kidneys are working extremely hard. Please pray for Cody for healing, peace and comfort. We love you, buddy!
caringbridge.org/va/cody
Sunday, July 31, 2005 9:44 AM CDT
FRIDAY UPDATE***
I feel like this week has gone from from bad to worse.
Wednesday Ashleigh's EEG did show some seizure activity, not actual seizures but the potential for seizures. Her medications seem to be helping but there is alot of damaged area.
Thursday Ashleigh had a MRI, the results are questionable and Dr. Kurtzberg has a specialist reading it to double check the results...as of now, the person that read it thinks there has been disease progression in one part of her brain. Dr. Kurtzberg does not see that happening with all of the skills that Ashleigh has gained. We will find out for sure next week. I must stress that Dr. Kurtzberg does not agree with these findings and she is waiting for her specialist to read it. We DO NOT know for sure that there is progression. Ashleigh has never had progression since her first MRI that was done during diagnoses!
Today, she had a bone scan that did not show infection, her white count is coming down and we have a plan in place. We will do the nerve conduction on monday and we will also repeat the CBC. If her white count continues to come down, we will go to surgery on tuesday. A new port will be placed and we will do the spinal tap then. We should be allowed to come home on Thursday.
Howard received a phone call on Wednesday to activate him for Operation Iraqi Freedom. We do not have details and I will not be able to post them here. Saturday after we will return home he will go on his two week annual training. He did request for that to be at his local armory, but it was denied. We have alot of planning to do, including getting nursing and hire help for Ashleigh's care. We will also make a plan for Ashleigh, just in case, there will be a plan that we both agree on. Even though Ashleigh received the transplant she is still considered terminal and we will have to plan for thing not to go our way. The military has been wonderful to us and we do appreciate everything they have done for our family.
Tonight, I ask for your prayers. Today, an advocate, an teacher, a boy, a hero has earned his wings. Hunter Kelly became an angel early this morning. Hunter was eight years old and he had krabbe. Hunter's parents started Hunters Hope Foundation after he was diagnosed, bringing parents and children together and supporting newborn screening, research and families. Ashleigh had her picture taken with Hunter a few weeks ago at him home, a picture that we will treasure forver! We thank the Kelly family for sharing Hunter with us and we will love and miss him always. God Bless you dear angel boy!
TUESDAY UPDATE***
Where do I start...Ashleigh had a wonderful visit with Dr. Escolar. She did track for her a little. Her entire team comments on how well Ashleigh is moving and communicating with us. She had a few ideas for therapy and equipment. The visit went very well and I left there feeling much better then Dr. Greene's appointment yesterday.
Dr. Kurtzberg...this will take a while...Ashleigh's bumps on her arms are infected. Dr. K thinks that it is the same staph infection that she had in her port. We are going to start treating with oral antibiotics while we wait for her cultures to grow. We are going to start looking for it on her bones and heart valves again. She said staph aureus plays hide and seek and it hides in the body until it causes problems. She is not contagious to other children, only by touching her. Her white count is 27.2 (normal is 3.8-14). We have many questions to find answers to, I will let you know more when we know. As of now, unless the cultures are positive, we are going to place a new port on Tuesday. If we do get positive cultures, surgery will be post-poned for 4-6 weeks while we treat the infection.
I have many questions still...I will update more later.
MONDAY UPDATE***
I would have to say, today was a roller coaster kind of day...We started very early with weight, height and blood pressure. All went well. We then had to do a very large blood draw from a vein (we removed her port, due to possible infection), this did not go well at all. After 6 sticks and only half the blood we needed, we gave up. We will have to try again later in the week. Sue is looking for a surgery slot this week or next to have a new port placed. We then headed to x-ray, all went well, the tech is awesome...we did chest, hips and spine. I didn't wait for the results, we will get them at clinic tomorrow. Next was an echocardiogram, again, we will get the results at clinic. Next on the list was a pulminary function...awesome, 408!
Next was Dr. Greene (eye doctor), he took lots of pictures and then said that the nerve is pale and that if she can see at all, he was not picking it up. He said he could not find any sign that she could see. Now, we see Dr. Escolar tomorrow and she will say Ashleigh can track, just very slow. That is also what our vision therapist has said. We don't know exactly what she can see, I know she does see something, I just don't know how much. Just kind of bum...hard to hear those things about your own child.
Hopefully, tomorrow will be a better day with Drs. Escolar and Kurtzberg!
Howard is going to the baseball game with another transplant dad, I am relaxing with my girls.
After a very long drive, we arrived at our aparment in North Carolina. Howard unpacked and I went food shopping. We then had a true Brooklyn dinner at our apartment, Nathans hot dogs and mac and cheese, great company.
Today, we are just taking the day off, we may go for a ride to Duke gardens or something but todays mission is relaxation!
Our schedule for tomorrow will be busy...
8:00 - height, weight, blood draws, chest, hip and spine x-rays
11:00 - Echocardiogram
12:00 - Pulminary Function
1:30 - Dr. Greene (eye exam and test of optic nerve)
Tuesday...
8:30 - Dr. Escolar (5 hour appointment with a developmental doctor and her team of therapist)
The rest of the day we will spend at clinic to see Sue and Dr. Kurtzberg
Wednesday...
8:30 - BAER/VEP (these measure the connection the ears and eyes have with the brain)
10:30 - EEG 4MRI of brain- 11am followed by LP
Thursday...
11:00 - MRI of the brain, followed by a Lumbar Pucture
Friday...
8:30 - Nerve Conduction
We are still trying to get in to a dentist and a final meeting with Dr. Kurtzberg.
I will update you as we get results.
Mackenzie is playing with her best friend, Katie Kristoff. I had a quick visit with Pam, Ryan and Alyssa look great! I am sure more visiting will be done, especially since their apartment is right across from us! Somehow, I feel at home in these tiny apartments and with these families!
Two more things I wanted to share...
this is a quote from Dr. K about newborn screening for Krabbe Disease...
"Time is of the essence in treating the children before symptoms progress and become irreversible," said Kurtzberg. "The diseases may be uncommon, but the cost to the child, their family and to society at large is enormous when one considers the burden of caring for a severely disabled child. It's simply impossible to put a price on a child's life."
Second, when I talked about Ashleigh "talking", she is moving her mouth and making noises but no actual words have come out...YET! I have received a few emails asking about what words she was saying, so I thought I should clear that up.
Love to you all...
Sunday, July 24, 2005 12:12 AM CDT
First, please add some special people to your prayers...
Our friend Maddie Trimper, who continues to have some very serious problems at Duke. caringbridge.org/mi/trimpermld
Julia Beatty, transplanted for Krabbe 7 years ago, became an angel last night. Please keep her and her family in your prayers.
Howard's grandfather, Pop, is still trying to gain strength after a very serious bacteria attacked his organs.
Howard's sister, Sandy, who is expecting her first child...just found out she is NOT a carrier of Krabbe!
Ashleigh's friend, Amanda, who is about to have surgery on her heart.
Okay, so I know this is going to be long and confusing so I will try to organize out last month for you...
First, Ashleigh is doing wonderful, she does have a little cold that sent us to the hospital last week for a night. They thought her x-ray was cloudy, but it was just her not breathing well. She is very fussy and still fighting some of the cold. She is doing well in her therapies and still loves the pool. I will post new pictures of her in therapy next week. I can also tell you, since other people have witnessed it...When we talk to Ashleigh she makes sounds back to us...like she is talking. Scott (Krabbe dad) wanted to know when she started talking. We had not shared this with anyone, because we really wanted people to experience it for themselves. She is constantly trying to communicate with us. She is amazing! All her blood work has been great and we have not made any med. changes. She is requiring suctioning and oxygen at times with this cold.
We did spend a few days at the beach, it was nice to see Mackenzie having so much fun. Ashleigh enjoyed the salt air...her skin cleared up and looked great. That must be the trick, we need to move to the beach.
We went to the Hunter's Hope Medical symposium, one of my favorite things to do. We went to session with researchers talked about the future of Krabbe, newborn screening, and different treatments. I talked with Dr. Kurtzberg and Dr. Escolar. I will see them next week also, for Ashleigh 2 year post transplant studies. At night, we sat by the pool and talked with some of the most wonderful people I ever met. Families who understand the journey we are on, who said " I know how you feel" and really do. Children who have different milestones. Lucus, 6 years old, turning his head for me to kiss him, Matthew, 17, smiling when I talked to him, Hunter, 8, with the help of his beautiful mom, rubbed Ashleigh's hand...all three of these boys have Krabbe. Laura Cross, a newborn transplant Krabbe child, WALKED across the finish line at the Laps for Life. Dalton, another newborn transplant, telling me I was too old to marry.Hearing one of our best buddies, Degan Miles, who was a newborn transplant that was at Duke the same time we were...say "Ashleigh" and show me his nose and ears. Visiting with angels parents and wishing I would say or do something to take their pain away...Corrine, Tiff and Rita...how I loved talking with you. Evie's grandpa, Ken, all the way from England. Daphne from South Africa...9 years old with Krabbe...she was amazing. Riding four wheelers and getting a little muddy at Jim's cabin, having a fanastic dinner and enjoying these wonderful people. Mackenzie swimming all night with Selena and Erin. I could go on and on about the great time we had, how understood we felt. With all the touching moments...the one that will always make my heart smile is that when we released the balloons, the music started and a few raindrops fell...tears from heaven from children who are so loved and missed.
We came home from the symposium, me feeling better about life in general and Mackenzie and Ashleigh both having colds.
Next week we go to Duke for studies and to catch up with some more families. We are also cooking dinner for the families that live on the unit. We remember well, how much that met to us and we hope to help ease some of the burden those families are suffering.
Mackenzie will be starting school soon, what a big girl she has become, with an understanding of the sick and compassion for the handicap. I pray she stays as beautiful, pure and innocent as she is today with the pure love she has for life always in her heart.
I have so much more to fill you in on but I just don't know where to start...we have looked into many options to have another child, but none really will work for us. So, I have given Ashleigh's nursery furniture away, to her aunt. Ashleigh will be in a big girl bed, while we try to decide if we should get a hospital bed. I have been in a extremely bad place with all of this, but I think I have accepted it.
We are going to start working more on Krabbe awareness and newborn screening. Two things that could save babies and families from the difficult road we have traveled.
You have all been wonderful to us and we thank each of you with all of our hearts.
Thursday, June 30, 2005 11:59 PM CDT
Ashleigh had another very busy week. She had a couple of difficult days with breathing and secretions, but they cleared up after a few hours.
Wednesday, we saw Amy (Dr. Renwick). We updated her medication list and talked about future care for Ashleigh. She put orders in for Ashleigh to see a kidney specialist (treats osteopenia), derm, and ENT. After the appointment we had lunch with Amy and Sarah then headed to the pool.
Ashleigh had some great movement but was fussy on and off. We then went to speech therapy. Sarah used a different kind of wobble switch under Ashleigh chin. She recorded "What do you see", then read Brown Bear, Brown Bear. Whenever she was suppose to say what do you see, Ashleigh was to hit the switch. She did it...she was in a mood but still hit the switch about 4 or 5 times.
Today, we went to occupational therapy, we did the same thing with the switch...Ashleigh did it 3 or 4 times. Then it was off to seating clinic. We were hoping to find something to better support Ashleigh in the car. Sadly, because of liabity, they do not make it. We did discuss Ashleigh wheelchair. The orthopedic, and two people at the seating clinic and several therapist are not happy with the lack of support it is giving Ashleigh. We talked about ordering her a new one. If you remember, after CP clinic, I mentioned a back brace for Ashleigh. The brace will be custome made for her and molded to her body. We are going to see if the wheelchair we have now will better support her after we get the brace, if not then we will most likely order the new one. We also are ordering Ashleigh some versa form pillows. The are like bean bag chairs, but you suck the air out and it becomes hard and it will support Ashleigh, it is also able to be used in the hot tub.
Mackenzie has her last day of riding camp tomorrow, she is going to do a little show. We are then heading to the beach for a week, then to the Hunter's Hope Medical Symposium.
Busy, Busy, Busy...
Saturday, June 25, 2005 8:40 AM CDT
Ashleigh had a pretty good week.
She has been very fussy at night, around 8:00 she starts to cry. We increased her FK506 again, this is the medications that keeps her immune system weak to help treat graft vs. host. It was disappointing to do but we can not get control of her rash right now, hopefully it is only for a few weeks. We are also going to do her first blood draw since removing her PICC line and port. Dr. K wants to see were her drug levels are before we make adjustments.
Mackenzie was in horseback riding camp this past week and she will go again this coming week. She loves it. She was trotting her first time on her pony, Oreo. She has also learned how to do a figure eight, jump and ride bareback. She cries when it is time to leave. She is going to continue with weekly lessons after the camp is over. It is such a confidence builder for her and gets her out doing stuff with other kids.
We are going to the beach for a week and then heading to the Hunter's Hope symposium. I think I really need to be with the families up there, I have had such a hard time lately and I know they will understand. We are also scheduled to go to Duke for studies in August. We have a very busy summer before Mackenzie starts school.
We are also planning a trip to Disney, yes another. This time we are hoping it is the whole family!
I am sorry for the lack of updates. D'Anne and Laura sorry for not answering emails. I have not been in a good place. Ashleigh has a big schedule next week, I will update soon.
God Bless
Tuesday, June 21, 2005 7:05 AM CDT
So, sorry for the lack of updates.
Ashleigh is doing very well. She is back to herself...smiling, laughing and of course, giving attitude to her therapist.
Yesterday we had an appointment at the CP clinic. Well, half of our appointment...we had half when Ashleigh was inpatient.
Dr. Dabney (orthopedic) was very nice. Filled with some great ideas and suggestions for Ashleigh. I talked with Dr. Kurtzberg last night and she agreed with everything he suggested (that is rare). Dr.Dabney wants new spine and hip x-rays, we are added them to our studies in August. He did feel her hips were good but the tightness in her legs can pull the hips out, so we are looking for signs of that. Her spine he feel might be positional, so we are going to look for better seating, a new car seat and possibly a soft back brace for when Ashleigh is sitting upright, to stop her from slumping over. We are going to get Ashleigh new AFO's, ones hat will come higher up on her legs, to help pull down on her hamstrings. We hope we can stretch them without surgery and using the knee immoblizers less...Ashleigh does not like them. Dr. Dabney usually sees his patients every 6 months, but he would like to see Ashleigh every 3 months, so we can sort out the many issues that she has with her bones. We are also going to go to a kidney specialist, who specializes in osteopenia. Ashleigh bone density test was very bad and they were suprised that she was not having new fractures.
After Dr. Dabney's appointment we went to register at the place that will make Ashleigh's AFO's and then headed over to therapy. Ashleigh had a PT evaluation so she can get back in the pool. She is cleared and will be in the water Wednesday!
As we were leaving the hospital, we ran in to Amy (Dr. Renwick). She gave us a few prescriptions that we needed and we talked about having an appointment next week. She also said that the 24 hour EEG results came back showing that Ashleigh was not having seizures. We are very happy. I am going to talk with Dr. K more today and I will ask her if we can go back down on her seizure medications.
Ashleigh's therapy schedule is going to change and get more intense.
Monday (at the hospital) OT and Aquatic
Tuesday (at home) PT and developmental (this may change a little for Thursday)
Wednesday (at the hospital) speach and aquatic
Thursday (at home) not scheduled yet
Friday (at the hospital) feeding and aquatic
There are so many children in need of extra prayers right now...Maddie Trimper, Ashley Rodriguez and two unborn babies.
caringbridge.org/mi/trimpermld
caringbridge.org/ny/ashley
When your pregnant, you don't think of your child being born with a terminal illness. You plan to put that child on the school bus, go to dance recitals, pick out prom dresses, and one day watch that child fall in love and get married...one day to have children of their own. Never did it cross my mind that I would spend weeks and months at hospitals to save that baby, never did I see myself drawing blood or giving 32 doses of medications a day through a tube. Now never again, will I be able to have a pregnancy without fear of my child suffering and dieing. I will never have that pure joy without it being clouded by disease. I envy those who could and pity those who are blinded at the same time. God has a job for Howard and I, we were chosen to travel this path. I only hope that I can fulfill it and bring honor to my baby girl who has suffered so much. I don't know how long I will be blessed with Ashleigh, but how blessed I will always be to be her mommy.
Monday, June 13, 2005 10:28 PM CDT
Quick update...
Ashleigh's PICC line was removed today and as of now...we will not be placing a port. I pray that this is the right thing to do for Ashleigh.
It was hard being at the hospital today but everything went much better than it did two years ago.
Mackenzie passed her vision test and is registered in school for September.
Thank you for all the emails and post in the guessbook. It is great to know that I am not off for feeling this way and you all understand where this is coming from.
Lisa, Please know that I think of Trinity often.
Carolyn, what wonderful news...safe in the arms of her mommy!
Colleen, Hope everything went well today.
Sarah, thank you for tonight...Love Isaac's.
Ann, thanks for understanding.
So many of you supported us through this journey, Thank you so much!
Sunday, June 12, 2005 7:54 AM CDT
I am sorry for the lack updates. Not much has been changed. Ashleigh still continues to have fevers, but she is awake and smiling. We have not seen any seizure activity.
Today is her last day for antibiotics and we are planning on removing her PICC line out on Monday or Tuesday. A PICC line can not stay in long, Ashleigh has had it two weeks. We are still not sure what to do about placing a new port. Ashleigh only will need it every 3 months or when she is sick from infections or seizures/blood pressure. During those times it may be critical to get an IV in her and being sick her veins may shrink, making it difficult to get a good vein. However, getting a port will mean another surgery and every time she gets a fever she will have to start antibiotics and have cultures taken. Dr. K, really wants us to have a port placed, however she said whatever we decide is fine.
Yesterday, I took the day off an went for tea with some girlfriends and did some shopping. It was a nice day to relax and enjoy.
Tomorrow, is the second anniversary of receiving Ashleigh's diagnoses. The memory is so fresh in my head...that oval table, hearing the words that she would die and the only hope she had was a experimental treatment. She has come so far, done so well...how we thank God for the gift He has given us...Ashleigh completes our family.
I would give anything for her to talk and walk, play like other children. Yesterday, I was with a pregnant woman and it was so beautiful to see, but inside I wanted to scream. I wish I could have that...without fear. For some reason it has gotten difficult to see pregnant woman and children that are Ashleigh's age or younger...seeing the things that Ashleigh can never have. It may not make sense but at the same time I am so happy for those woman and children. I know this all sounds selfish. I am happy for those, yet sad for the things that Ashleigh does not have. I have a baby book...I don't have half of it filled out...Ashleigh does not have so much...her achievements are different and they do not make books for the sick. We don't have a book for first dose of chemotherapy, transplant day, engraftment day, regain skills...so on.
Some day, my dear Ash. I promise you better days.
Monday, June 6, 2005 7:51 AM CDT
After a few very scary nights with very low blood pressure, we made some medication adjustments and we are home. Saturday, Ashleigh was discharged from the hospital only to be in the ER on Sunday for a fever of 38.7 and blood in her diapers.
They did 4 different blood cultures (two from the PICC line and two from a vein), urine cultures and stool cultures. Ashleigh has been on constant antibiotics for 7 weeks so they tested her for c-diff.
We are increasing seizure medications and hopefully this will all pass. Dr. K thinks her heart rate, breathing issues, blood pressure and fevers are all seizure related. The doctors here are not ready to say that. We are waiting for results from an EEG.
If it is seizure related than we have no way of knowing when it will happen making the chances of Ashleigh crashing higher due to blood pressure and breathing issues.
We are home now. We will be re-admitted for Ashleigh to have her port replaced next week or so.
Thank you for your continued support and prayers.
Please keep our friends Maddie and Ryan in your prayers.
caringbridge.org/mi/trimpermld
caringbridge.org/ma/ryan
Sunday, May 29, 2005 2:46 PM CDT
At 8:15, yesterday morning, they took Ashleigh down to surgery. Around 11 am she returned to her room. She did wonderful. Her port was removed and she is treating with IV antibiotics for two weeks, yes...we will be in patient, STILL! Afterwards we will decide when to go back to surgery and have a new port placed.
Ashleigh slept well last night and today is is wide awake looking around. Moving her legs and arms. Like nothing happened to her. The resident last night was surprised to see how much she was moving and awake. Earlier in the week, when we had this doctor, Ashleigh was not moving much.
Today, Ash is wake, moving, oxygen is 99, heart rate is back to 110...things look great for the first time in weeks.
Thank you for your continued support and prayers, whether through email, this guessbook, phone calls or visits...you have all carried us through a long and scary journey! Thank you!
Friday, May 27, 2005 8:00 PM CDT
After 6 weeks of trying to clear Ashleigh's port we have decided to go to surgery. Tomorrow morning at 8:30 Ashleigh will be taken to O.R.
We have thought several times that we have cleared the infection but it continues to come back. Her bones and heart are clear for now and we are trying to make sure they stay clear.
Please pray for Ashleigh. I am sorry, I just don't know what else to say right now.
Wednesday, May 25, 2005 7:20 PM CDT
Where to start?
Ashleigh continued to spike fevers so they put her on two stong antibiotics and an anti-fungal medication. All blood cultures are negative, viral battery is negative, urine is negative.
Yesterday, the doctors became very aggressive looking for whatever it is that is causing the fevers. She had a test to see if her nissen has come loose...it has not. She had a echo to see if there was bacteria in the valve of her heart...none was located. They injected die into her port to see if there was a clot or bacteria...no.
She is on a 24 hour EEG right now.
Tomorrow she will go for a bone scan...looking for infection of the bones.
We are not sure what the next step will be. I am going to see if we can stop the IV meds and see if she spikes a fever again. Hopefully we got whatever this is.
Thank you to all our Krabbe families for your continues support, prayers, emails and well wishes.
The nurses, doctors, residents and therapist have been wonderful to us. We feel like we have been here forever but they have made this so much easier. We have made some special friends over the past 6 weeks and we are thankful to each person who has cared for Ashleigh.
Remember a few months ago, when Ashleigh had the allergic reaction during feeding therapy. I met another mom, Colleen. Colleen has become a huge amount of support for me and when she brings her very adorable little girl, Amanda, she stops by and checks on us and she calls me every few nights...A few nights ago, Colleen asked me what she could bring to me...I jokingly said a chocolate martini. Today, Colleen dropped Amanda off at therapy and came to visit...with gifts. She had cookies and donuts, 4 beautiful glasses, chocolate syrup and chocolate milk...We had a "martini party". One day we will have to have a real one! Thank you Colleen for being so wonderful to me. You are a beautiful person.
I will update in a couple of days...as soon as we have some results. Thank you for your continued support and all the extra prayers.
Please also keep Maddie Trimper in your prayers.
caringbridge.org/mi/trimpermld
Sunday, May 22, 2005 5:35 PM CDT
A new week at "hotel" duPont, with a new set of issues to go along with it...
Ashleigh is still requiring alot of suctioning and oxygen. She spiked another fever so a new round of cultures have been sent and blood work done...the CBC was good. White count normal. New antibiotics started. We are here until at least the cultures come back...
New issues...
Ashleigh is arching, kind of like she did while being diagnosed. The doctors sent a culture of her urine (last one was positive, and we treated it), we are also thinking about doing a stomach study to see if her nissen has come loose. The commonly do and Ashleigh has had it for close to 2 years. This will explain the arching and the increased secretions.
We are waiting for the DNA to come back on the positive cultures from before. If they come back as the same, the port has to come out....or if the culture draw today comes back positive, most likely the port will come out.
There are two different surgeries that may be needed. Please pray that both issues are cleared without surgery.
Ashleigh has been in good spirits at time. Laughing and smiling. We all think Ashleigh enjoys being here...Can we set up a room in our house to trick her. All conversation that has the words home in it will have to be done outside the room, for she misbehaves when she thinks we may leave.
Have I mentioned how wonderful everyone has been to us...the doctors, nurses and therapist have been so caring to Ashleigh and so very patient with me! They are a wonderful group of people.
Thank you for all the extra prayers and well wishes. I will update more about the cultures when I know something.
Please keep Maddie Trimper in your prayers, she is having a difficult time at Duke.
caringbridge.org/mi/trimpermld
Wednesday, May 18, 2005 2:19 PM CDT
Not much has changed. Ashleigh continues to have seizures, increased secretions, requiring oxygen. I can't say much, expect please pray that this all goes away soon. We have been in the hospital for more than a month...longer than we were for transplant. Her blood cultures are negative, but her urine has a positive...(for fellow transplant families)less than 10,000 rods, so it may be a false positive. We are treating it just in case. We are doing a chest x-ray to look for fluid. That is about it...I will update more as we know.
I have a few things to say on a personal note...
Thank you so much to my dear friend, Sarah, for the incredible friendship that you have given me. You are so wonderful to me and my family. You, Howard and my girls gave me the best in the hospital birthday ever!
Friday will be two years that Ashleigh was admitted to the hospital for a diagnoses, the same hospital we are in now. I hate the idea of being here, but this is the best place for her right now. The nurses on this unit have taken very good care of her. They have been wonderful to Ashleigh, and patient with me!
I got this from another family. I thought I would share it with you. It fits the time of year...Ashleigh anniversaries for the horrible journey. As much joy as we have been able to celebrate, the evil still haunts us. We thank God everyday for the gifts that he has given us...our family, friends, fellow Krabbe and transplant families, the dear caringbridge families, therapist, doctors and nurses, the wonderful friendships, and our two beautiful girls...Ashleigh and Mackenzie. As terrible as this journey has been, we are so blessed to have the things we do...
Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker
My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.
Of course, that's what she says. That's what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more.
Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.
Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.
As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.
Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.
I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.
From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.
Thank you.
God Bless
Monday, May 16, 2005 10:22 PM CDT
I am so sorry that it has taking to long for me to update you all.
Ashleigh is back in the hospital, her forth time in 5 weeks. On Saturday, we ended up going to the ER for her culture and CBC. The doctor came in and said they were going to admit her because her white cell count was 20.4, doubled what it was when she was discharged. Three cultures are still pending. For our fellow transplant families her diff was 85 %.
Ashleigh was admitted back to the same floor that we have been on, they have taking such wonderful care of her. What a great group of nurses! The resident that I didn't care for is her doctor again and we worked out our differences. We are not sure what is really going on. Nothing is growing in the cultures so far. Infectious Disease sent the DNA of the last positive cultures to find out if they are from the same origin. If they are, we are removing the port. The surgery team here will talk to the team at Duke about Krabbe kids in surgery and the use of medications. Ashleigh has never had a problem, so hopefully...
She has also required about .5 to 1 liter of oxygen. She is requiring suctioning and breathing treatments at times. She has had several small seizures and two very large ones. We had to use IV ativan to stop one yesterday and one today. The one yesterday was about 10 minutes and today was about 15 minutes. Ashleigh does not usually have seizures that last that long.
I feel as if she is getting worse with more symptoms...
Please continue to pray for her and our friend, Maddie Trimper. Maddie is at Duke. caringbridge.or/mi/trimpermld
Thank you and God Bless
Thursday, May 12, 2005 2:15 PM CDT
Yesterday, Ashleigh received her last dose of antibiotic and she was discharged from the hospital. Surprised?, us too. On saturday, a nurse is coming to our house to draw a blood culture (hopefully, a CBC too). If that culture shows staph aureus than the port will be removed. I can't say I agree with this, but all the doctors seem to think this is the best plan.
Our concern is that Ashleigh got mixed cultures before, so who knows if the one being drawn on Saturday will show the bacteria. If it is sitting somewhere in the port and we don't get it...if it sits and grows...we can do the what if's all day...in a month or so, Ashleigh could get very sick, especially if the bateria entered her blood stream.
Taking Ashleigh to surgery could be difficult too, I understand why they chose not to remove the port. Krabbe children can have a hard time in surgery. Ashleigh would have been required to have two if we took the route.
Either way, it is hard.
It is good to be home. I haven't been here in weeks. I kept Mackenzie home from school (pre-school) to spend sometime with her and Ashleigh.
Ashleigh has had a few seizures today...full cry and shaking. She is also having alot of very messy diapers...most likely because of all the antibiotics she had.
Monday, we should have an idea of what these cultures look like and what we will be doing.
I told alot of people about Krabbe and transplant, handing out brochures to everyone who entered her room...telling everyone about the need for newborn screening.
Thank you for all the prayers, please keep them coming. We are not sure if this is over yet! Thank you and God Bless.
This was just posted the Hunter's Hope...it is long but very important in the efforts for newborn screening.
AAP ENDORSES NEWBORN SCREENING REPORT FROM THE AMERICAN COLLEGE OF MEDICAL GENETICS
CHICAGO ˆThe American Academy of Pediatrics (AAP) has endorsed a report on newborn screening prepared by the American College of Medical Genetics (ACMG) for the Maternal and Child Health Bureau (MCHB) of the U.S. Health Resources and Services Administration (HRSA).
Annually, 4.1 million newborn babies are screened for congenital disorders in the U.S. and 5,000 infants are diagnosed each year with a congenital disorder. But each year, more than 1,000 newborns go undetected for conditions that could have been identified through newborn screening because the administration of newborn screening is not uniform throughout the United States.
Currently, newborn screening is an individual function of each state, and screening programs vary widely across the United States. While every baby born in the US has some newborn screening, it's possible because of the wide variations between states for a baby born in one state to be screened for as few as three conditions, while across the border in another state, the same baby could be screened for more than 30 disorders.
Since 2002, ACMG, working on behalf of the federal government, has convened expert work groups to examine best evidence on screening for certain conditions. This work generated the release of a report recommending that all babies born in the U.S. be primarily screened for the same 29 disorders. This would eliminate the current situation where babies born in states that screen for more disorders are at an advantage as the outcomes of many congenital conditions can be drastically improved when they're identified early.
In its endorsement of the report, the AAP Board of Directors commented, „While we endorse the concept of expanded newborn screening, we strongly maintain that an explicit follow-up system must be established to support its effects on pediatric practices. Through our endorsement of this report, we join fellow national partners (i.e. March of Dimes) in the understanding that the US Secretary‚s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) is charged to make such implementation recommendations. We acknowledge that such a process must be a dynamic one, incorporating pragmatic structural changes in the operation of the state program, as well as evolving tests and treatments.‰
According to AAP President Carol Berkowitz, MD, FAAP, „The AAP wants to recognize the importance of national consistency and wants to work with the Secretary of Health and Human Services to be sure newborn screening involves a medical home, is fair and equitable to families and doesn‚t allow children to slip through the cracks. We don‚t want a child to be identified, and then not receive the necessary care or follow up.‰ According to the AAP, a medical home is an integrated approach to providing continuous, comprehensive and coordinated primary heath care services in a high-quality, cost-effective manner.
Nancy Green, MD, FAAP, and Medical Director at the March of Dimes says, „We applaud AAP‚s leadership on this very important issue in pediatric health. March of Dimes and AAP should continue to work collaboratively on improving newborn screening in the U.S. This includes the implementation of a national uniform panel of newborn screening disorders that will help spare many children from unnecessary disability and even death.‰
Additional information on newborn screening can be found in the „Parenting Corner‰ of the AAP Web site http://ww.aap.org
END
The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults
Tuesday, May 10, 2005 8:35 PM CDT
I wish I had some answers for you, but we are still sitting here guessing what is going on with Ashleigh. She looks great, awake, smiling and laughing. Her heart rate has been well, a little jumpy today, but better. Oxygen has been stable, breathing treatments have been cut back and she is only requiring suctioning a couple times a day. She is almost finished this round of antibiotics and we requested to have a consult from a bone marrow transplant doctor. We were excited to have Dr. Benston added to Ashleigh's growing team of doctors. Dr. Benston (Kristi) did her fellowship at Duke and has treated Ashleigh in the past. If you have been following our journey from the start, Kristi is the doctor who sent Ashleigh to PICU when she crashed during transplant.
Kristi and Dr. Renwick are going to phone conference with Dr. K tomorrow to try to decide the best plan of action.
The problem seems to be that this bacteria is playing peek-a-boo, and it is a very serious bacteria (Staph Aureus)if untreated and very difficult to get ride of. Kristi does not seem to think it went away so easily. Dr. Renwick does not like the port at all. Dr.K wants a new port placed after more antibiotics. We will see what happens after they all go over her test and talk. I will update you more after I talk with her doctors.
We met a new doctor yesterday, Dr. Bachrach, he is a specialist with brain disorders. He is going to just be familiar with Ashleigh's case and we will see him every 6 months. Dr. Dabney (sp?) is an orthopedic that we were suppose to have an appointment with that was post poned. We are waiting to hear from him. Dr. McKay will also be added to Ashleigh's growing team of doctors, he is a specialist in osteopenia in children.
Okay, I will write more after I talk with them tomorrow. Good night and thank you for all your extra prayers...they are working!
Saturday, May 7, 2005 6:14 PM CDT
Mackenzie and I are home from a magical trip to Disney. Mackenzie said "I am so excited, I can feel it in my legs". She had dinner with the princesses, breakfast with Pooh and breakfast with Mickey. Her highlight was meeting characters and getting autographs and pictures. She loved the rides, especially the Mad Hatter's tea cups. She also "couldn't get that song out of her head"...it's a small world. Fireworks and parades ended each night. I will post pictures of her tomorrow. Mackenzie needed that trip and she needed time with me. It was a great time and she told everyone about her sister at home with Krabbe. She told JoJo the Circus Clown that Ashleigh loved JoJO. Each day she dressed in a different princess costome and headed out for a day of magic, excitment and pure joy.
On the flight to Florida, Mackenzie dressed as Mulan. We checked into our hotel and headed to Animal Kingdom. Loved the safari ride and had pictures with Mickey, Minnie, Goofey, Donald and Stitch. That night we had dinner at Rainforest Cafe and went for a walk around our resort. Bed early...
Tuesday we went to MGM in the morning...met tons of characters and saw some shows. Oh, Mackenzie was Snow White all day. She got her face painted like a sea princess and we headed to Epcot for dinner with the princesses, dressed in a Arial costume. It started to rain so we got some ponchos and kept on going. She was a trooper. The rain was so hard that we were still wet though our clothes. We got back to the resort and took a warm bath and went to bed.
Wednesday we went to Magic Kingdom for breakfast with Pooh and friends and then enjoyed a day of rides and more characters. We were there from open to close and had a few showers during the day. We had a awesome time. A few times I filled up, wishing we were enjoying this trip as a family. There was a boy there with Make a Wish. I filled up and cried. We had lunch with his parents. He has a undiagnosed brain disorder. He is terminal. Sean is not expected to live much longer and this trip was to build beautiful memories for the family to hold onto.
Thursday we had breakfast at Chef Mickey's with Mickey and friends. We then headed back to Magic Kingdom and then to MGM for a terrific light show.
Friday, I gave Mackenzie a choice of where to go. She picked MGM to see the Beauty and the Beast show and Playhouse Disney. See JoJO to tell her about her sister. We were about to leave to go to Epcot and she saw characters so we stayed at MGM. We headed back to our hotel for our car to take us to the airport.
My friend Sarah picked us up and we slept at her house last night, our flight got in late and she lives 10 minutes from the hospital. We got up this morning to come to the hospital.
Ashleigh...
Everything is about the same. It is a waiting game. Waiting to see if her cultures continue to grow bacteria, waiting to see if she spikes a fever, waiting to see if the antibiotic works, waiting to see if she is going to need surgery. We have been in the hospital for about 2 1/2 weeks and we may have to stay another few weeks. If the cultures are negative we will be out on Wednesday or Thursday.
Ashleigh is getting breathing treatments 4 times a day and still on her regular schedule. On Monday, she has her big appointment at the CP clinic. She is going to keep it because it is hard to get in there and it is down stairs in the hospital.
She looks great. She has been awake looking around and smiling today. I think she missed her mama! ;-)
Howard did a awesome job with her. Every nurse or aid that comes in tells me how great he is with her. How blessed are we to have him!
We are 13 days from the second anniversary of Ashleigh's first hospital stay. I hope not to be in here. This time of year is so hard. At Disney, seeing those children...God I pray for the day that Ashleigh can walk, run, play and talk. I believe in my heart that that day will come...I just need some help getting through these next few months. Being back to reality and in the hospital has been hard today...I love being with Ashleigh, snuggling with her and holding her tiny hand, I...never mind.
Please keep our friend Maddie Trimper in your prayers. She transplanted just after Ashleigh (she took Ashleigh's room). The Trimper family has become very special to us and Maddie needs alot of prayers. She is PICU and having alot of issues right now. Please go to there website and offer that same great support that you have always given us...
caringbridge.org/mi/trimpermld
Thank you.
God Bless
Monday, May 2, 2005 8:59 AM CDT
The day has finally come for Princess Mackenzie to experience what she as only been able to dream about. Today Michelle and Mackenzie went on a well deserving vacation to Disney. I hope they have a great time and enjoy their mother daughter time.
Now to the weet little Princess Ashleigh. She gets Dad and of course she is staying at Hotel Dupont. I will ry to catch everyone up on what has been going on. On the 27th we got a positive blood culture. Since then we had two negative results and that was great news. Today we got back on the "roller coaster" yesterday's culure came back positive. So it looks like the bacteria likes the game of "peek a boo". So now we have to see what the infectious disease team recommends for a course of action. She is on two different antibiotics right now. I wil update more when I now more.
Thank you for our continued prayers and support for our little one. Please keep Ashleigh and all of her friends in your prayers.
Howard
Saturday, April 30, 2005 8:43 AM CDT
We were discharged from the hospital, however we were only home 3 hours when the hospital called us to tell us that Ashleigh's culture from her port came back positive. We agreed to do IV antibiotics at home. Home health could not have a nurse come out to do another culture before we started the infusions so we went back to the hospital for the culture and her first infusion...
Ashleigh had a reaction to the Vancomycin because the infusion was put in too fast and turned bright red (Red Man's), her heart rate dropped down to the 50's and stayed there most of the night. She was readmitted for her heart rate. Yesterday, the culture came back as a pretty serious bacteria. The good news is that it is gram-positive. We are going to do IV infusions in patient, culture her everyday and pray we can clear it. If not, she will have her port removed, more IV and then the port replaced.
This answers alot of our questions about Ashleigh's increased sleepiness, seizure and breathing issues. She is on her way to recovery and hopefully we will be back on track soon.
Thank you for all your well wishes and prayers. Amanda and Corrine, I am sorry I have not been able to call you back, as soon as things settle down I will.
Thursday, April 28, 2005 11:42 AM CDT
Yesterday morning, Ashleigh's pulse-ox alarmed...it does every morning when she wakes and shakes it off of her finger. When I went in to get her the pulse-ox was on, her oxygen was 67 % and her heart rate was 160. Ashleigh's lips were blue and her body had almost no color. I yelled for Howard and began suctioning her. After clear her airway from secretions and mucus, she seemed better. We put her on oxygen and called the doctor. After about a 1/2 hour she started filling up with secretions again so we took her into the emergency room. She had her blood, urine and secretions cultured. Everything so far has been negative. We were admitted for "observation".
Ashleigh is still on oxygen (2 liters) and her chest is working very hard. The thought is that she has a viral infection that has been lingering and she is now getting the blunt of it. Another thought is that she has allergies and the weather is hitting her hard.
I will update more as we know...
Wednesday, April 27, 2005 9:19 PM CDT
Ashleigh was admitted to the hospital today for breathing and high white count. We will update more when we have more information. Thank you or your continued prayers and support.
Monday, April 25, 2005 2:27 PM CDT
There has not been much of a change with Ashleigh. We have tried the medication changes and there is not much change. She is awake but not very much. We have been talking with Sue and Dr. Renwick about getting an 48 hour EEG. If we are not able to set one up here, Howard will take Ashleigh to Duke next week. We are also trying to set up a MRI, as part of her studies and to check for fluid building up. Fluid on the brain is a common complication for Krabbe, so far we have been very lucky. Although, this is not likely, it is always a possibity.
Mackenzie is so excited for Disney, 6 days to go! It is hard knowing that Ashleigh has something going on and I will be leaving her. Mackenzie needs me to be her mommy and some time to just enjoy being 5! Howard is great with Ashleigh and he knows all of her care just as well as I do. They will be fine, whether they are in New Jersey or North Carolina.
Thank you for all the great suggestions for Ashleigh's wish...
We have spoken with Dr. Kurtzberg about the hot tub and there will be chemicals that would help with controlling the bacteria. Ashleigh's immune system although weak, has recovered well.
Friday, April 22, 2005 9:16 AM CDT
Yesterday was a better day! Ashleigh woke with big smiles and a few giggles. She stayed awake until about 2 in the afternoon and then slept almost the rest of the day. She got up about 7, stayed awake for 2 hours and went to bed for the night. She is not back completely, but whatever is going on seems to be going away.
This morning she has been awake but a little fussy. We are going to leave here in a few minutes to go to aquatic therapy. Hopefully, that will relax her.
With everything going on I did not get a chance to tell you two big things that are going on...
In 10 days me and Mackenzie are going to Disney. Just the two of us, for a little mommy-big girl time. She is so excited and I really think she needs this time with me. This past hospitalization really was hard on her.
After the trip we are flying to North Carolina and meeting Howard and Ashleigh to do the Rainbow of Heros walk. Thank you to all of those who have donated to Duke's Family Support! If anyone is interested in sponsoring us let me know.
The other big news is...while in the hospital we spoke with our social worker and next month, when Ashleigh turns 2 1/2 (I know can you believe it) we are going to make her wish for Make A Wish Foundation. After alot of thinking we are between two things...a dog that would help her and smell seizures (we are not sure if she is old enough for a dog, I heard they have to be at least 5) or a gazebo with a hot tub for more aquatic therapy. If we do the hot tub, Ashleigh will go only go to the hospital once a week, cutting down her risk for infection. She would still treat with the aquatic therapist at the hospital on that day, we would just be able to do more here. So, what do you think. We are also up for more suggestions, please let us know what you think. We really want something that Ashleigh will benefit from and get alot of enjoyment from. My email is below if you want to drop us an idea!
Okay, I am late for therapy...I will write more later
Wednesday, April 20, 2005 4:43 PM CDT
I wish I could say things were better with Ashleigh but they just are not. She is still sleeping alot, when she is awake she is crying. Her heart rate continues to be lower than her base line. Her urine and bowel movements have very strong odor.
I just talked with Dr. K and we are going to try to get a EEG and get more levels on her seizure medications...trying to play with medications.
Dr. Renwick e-mailed me to let me know there are a few viruses that are around, causing some of the issues that Ashleigh has, but not testing positive for the known viruses like rotovirus.
I am at a lost. I don't know what to do with or for Ashleigh. Any suggestions you all might have would be greatly appreciated, extra prayers are always needed and we are so very thankful for them!
I will let you know of any changes or results as soon as we know something.
God Bless.
Monday, April 18, 2005 12:00 AM CDT
Howard has already filled you in a bit...I will try to catch you up more...
Ashleigh heart rate was going from the 60's to 150's, jumping all over and then sitting for a while before dancing again.
Her saturations were in the upper 80's up to 100. We used oxygen because her nose was flaring and chest was working hard to keep it up.
Blood pressure was 70's over 50's.
Chest x-ray was clear (no fluid), leg and spine x-ray's were clear (looking for compression fractures).viral battery (nasal wash) was negative for RSV and flu), stool was negative for rotovirus, blood cultures were negative, urine was "dirty"...she has some bacteria but we were not sure if it was contaminated or true infection. They are thinking it was contaminated because it had several different bacterias.
So basically, we don't know what caused this. Her white count was elevated so we know there was some type of infection but only tested for the most common.
What they feel happened was...Ashleigh's body was fighting an infection (don't know what or where) and it lowered her ability to control her seizures. She was having non-clinical seizure activity which as causing her to sleep.
Ashleigh was on high dose iv antibiotics for a few days and her white count is back down.
We have known for a while that her topamax (seizure med) level was low. We did not increase it because we were not seeing any seizure activity and she was so awake and alert, increasing it would sedate her for a while. We have decided to increase it and also give her a few days of a higher dose of another seizure med. The second one, Ativan, will be lowered again in a couple of days when the topamax levels come up.
After talking with Dr. K, Sue and Dr. Renwick we thought it was best not to travel with Ashleigh and we cancelled our trip to Duke this month. Her MRI was postponed until the first week in May and we did her blood work and IVIG as an inpatient yesterday. Ashleigh was discharged late last night. Sadly, Ashleigh also missed her Aunt's wedding saturday.
Today, Ashleigh is still sleepy but much better. Her heart and oxygen alarmed a few times last night, we are keeping a close eye on her for now.
Thank you for your continued support and extra prayers the last few days. As always, they help carry us through these difficult times.
While inpatient, I met the mother of a little 3 year old girl who was diagnosed with ALL (leukemia) on thursday and started chemo on saturday. Please add Reagan and her parents to your prayers.
Ashleigh received awesome care in the hospital...the nurses, therapist, and doctors were great. At the end of Ashleigh's bed we had Hunter's Hope brochures for everyone to learn about Krabbe. Taking advantage of the opportunity to educate...especially the residents who one day may save a child from this disease.
Friday, April 15, 2005 0:01 AM CDT
Ashleigh is back to some old tricks again keeping us on our toes. Michelle and I took Ash into the emergency room at Dupont because she didn't look well to us. While in the ER her blood pressure dropped and they had to give her extra fluids. Her heart rate has been up and down the whole time. They beleive she has an infection of some kind. She was admitted to determine what was going on. Michelle will update more when we know. Please send exta prayers Ashleigh's way. Thank you all for your support.
With Love and Hope
Howard
Tuesday, April 12, 2005 10:36 PM CDT
Sorry, I haven't updated. Just not sure what to say...
Somehow, the bad is always lurking around the corner. Looking for the opportunity to get it's paws on Ashleigh. She has been doing so great, smiling, happy, laughing...doing great in her therapy sessions and enjoying the weather.
Today, sadly, that changed. Ashleigh has been VERY sleepy. When her therapist came, it took me over a half hour to wake her up. I picked her up, bounced her, talked to her...
Finally, I took her blood pressure and put her on her pulse ox. Both were okay. Her blood pressure was a little low but not too bad. This evening her heart rate started getting unstable...jumping to 150 then dropping to low 80's
After therapy, she slept...all day. She slept though feeds, diaper changes and story time with Mackenzie. I called Sue and Dr. K. We decided to hold her evening dose of Ativan but keep her topamax and zonegran incase this is seizure related. If anything else changes we have to go into the hospital to be admitted.
Ashleigh has done this several times...most times they related it to seizures. Her seizure medication levels dropped too low or the wrong medications being used for Krabbe. Last year when she did this, same exact thing, she ended up in PICU on a vent. So, it was kindly pointed out that she does this sometimes...it also almost killed her once.
We are due to go to Duke this weekend, we are going to try to move that up incase this is serious. We need to get some blood draws to check her zonegran and topamax levels. She will also have a MRI, which was scheduled before this. The purpose of it is to tell us how the brain is making myelin however, it will also let us know if there is any fluid present. Fluid could cause increased sleepiness and would require a shunt to drain it. Ashleigh has been very lucky in avoiding it and we pray that is not the case. They do feel that would be very unlikely but it is always a possiblity so when she does this...it is standard to look for it. We also will do some blood cultures to make sure there is not an infection causing increased sleepiness. Sue thought that was unlikely, since Ashleigh has not had any serious issues with the infections. We will know more tomorrow and we see how she is though the night. I will post more as soon as we know something, hopefully this will pass.
Please continue to keep Ashleigh in your prayers. Your support and prayers have carried us so far. Thank you!
Tuesday, April 5, 2005 10:07 PM CDT
Ashleigh has been awesome!
Monday she had aquatic therapy. Jen gave her a huge workout and Ashleigh gave her a even larger attitude. We then talked with Dr. Renwick about a few issues.
Today, I spent most of the morning trying to schedule appointment.
Tuesday, Ashleigh spent most of the day outside. She even had therapy outside. Ashleigh had PT first, Ann put Ashleigh in the swing. Ashleigh didn't seem to enjoy it but we are working on the stimulation. Ann said that children with neurological diseases benefit a great deal from swinging. We also may have to check into a better swing for her. The swing we have now is just a infant seat and did not offer enough support. Ashleigh also had developmental therapy, but she decided that the fresh air tired her out and slept.
Ashleigh has PT on thrusday and a full day at the hospital on Friday...aquatic, feeding and doctor appointment!
Sunday, April 3, 2005 11:43 AM CDT
I think we have enough rain for the entire month of April...we are flooded! We are so ready for the May flowers!
We are home from our trip to North Carolina...
Ashleigh is doing so well. We are enjoying her being awake and looking around, her laugh brings us so much joy.
She is off today, tomorrow Ashleigh will start her day with developmental therapy and then go to aquatic therapy in the afternoon. Howard is going to extend our pond this week and we are hoping for the rain to stop to get some yard work done! It is nice to start moving toward a "normal" life. We are looking forward to enjoying a great summer! Ashleigh will enjoy sitting outside in the fresh air...well shaded to prevent graft vs. host.
We are scheduled to return to Duke on the 19th for our monthly visit with Dr. K, a MRI, and Dr. Greene (eye doctor) has a new test to check the connection between the eye and the brain. As nervous as we are for the results of that test, it will also give us an idea of how to work with Ashleigh and how to do more vision therapy.
Driving to and from Duke was difficult...summer is coming and traffic is much heavier. Our normal 6 hour trips took 8 hours!
We had a wonderful time and Ashleigh was incredible for Dr. K. We arrived Thursday night and had dinner with Kelly (mommy to Angel David and family support for Hunters Hope) and her son, Brian. We checked into the hotel and just relaxed. Friday, I had lunch with D'Anne (mommy to Jackson) and then went back to pick up Howard and Ashleigh. We met Dr. K, June and a student at their office building and went to the conference. We went to a room and just waited for our turn to speak. Dr. K did a session on stem cell transplants, the hope that cord blood has to offer, Hurler Syndrome and Krabbe Disease. Including a project that she is working on that may better help Ashleigh. Dr. Fleisman from the NIH did a session on the need for newborn screening and the ethics behind it. Both session were very interesting, especially the hope that cord blood stem cells offer.
The three of us went up with Dr. K for the third session. Dr. K asked us to tell how Ashleigh was diagnosed, how we found out about Duke, how we decided to go to transplant and so on...then the journalist started asking questions. I was nervous at first, but after a few minutes it was okay. It is all stuff that I have said several times...just never infront of large groups of people. When the session was over, we had reporters coming up asking to call us, mostly about the need for newborn screening. We talked about the difference in Ashleigh and a newborn transplant, and the children who were not transplanted. Dr. K stressed throughout the day the need for newborn screening. Oh, Dr. K had me tell them about Mackenzie's baby doll that has Krabbe as a way to show the effect it has on the family members. Anyway, we walked away feeling that we taught them about Krabbe, transplant and the need for newborn screening!
A little trivia that we found interesting...the first cord blood transplant was done with blood from a sibling in France but the child was from North Carolina. FDA would not allow it here so the child went to France. The first UNRELATED cord blood transplant was done at Duke. We saw slides of children we know...Haley, Henry, and the Jarrells. We also saw how the cord blood is collected and different grafts about the success rate of cord blood vs bone marrow.
Another interesting lesson...Embryonic Stem Cells were injected into the brain of a patient with Parkinson's, they thought is was a mircle cure...the patient regained all of his skills...however a year later the complications caused more damage and the patient was in worse shape. The treatment was not successful and they are attempting it with cord blood.
After the conference we went to dinner with Dr. K, June and the student. We had a good time, talking about medical stuff along with some social stuff. We planned a pretend party for a fund raiser...silly stuff. Dr. K commented several times on how well Ashleigh was doing being out, she didn't cry or startle at noises...She stayed awake, looking around. Ashleigh really enjoyed being in public! It was nice to have her enjoy such a simple thing.
Howard, Ashleigh and I went back to our hotel and lounged around...then got up in the morning for the long ride home.
Oh...when the doctor from NIH was talking, Ashleigh started laughing and just kept getting louder. Everyone started laughing and he had to tell her that he was a doctor and a grandfather...he could talk over her laugh. It was great!
Thank you all for your words of encouragement, emails, phone calls and post in the guessbook. God Bless.
Sunday, April 3, 2005 11:43 AM CDT
We are home from our trip to North Carolina...
Ashleigh is doing so well. We are enjoying her being awake and looking around, her laugh brings us so much joy.
She is off today, tomorrow Ashleigh will start her day with developmental therapy and then go to aquatic therapy in the afternoon.
We are scheduled to return to Duke on the 19th for our monthly visit with Dr. K, a MRI, and Dr. Greene (eye doctor) has a new test to check the connection between the eye and the brain. As nervous as we are for the results of that test, it will also give us an idea of how to work with Ashleigh and how to do more vision therapy.
Driving to and from Duke was difficult...summer is coming and traffic is much heavier. Our normal 6 hour trips took 8 hours!
We had a wonderful time and Ashleigh was incredible for Dr. K. We arrived Thursday night and had dinner with Kelly (mommy to Angel David and family support for Hunters Hope) and her son, Brian. We checked into the hotel and just relaxed. Friday, I had lunch with D'Anne (mommy to Jackson) and then went back to pick up Howard and Ashleigh. We met Dr. K, June and a student at their office building and went to the conference. We went to a room and just waited for our turn to speak. Dr. K did a session on stem cell transplants, the hope that cord blood has to offer, Hurler Syndrome and Krabbe Disease. Including a project that she is working on that may better help Ashleigh. Dr. Fleisman from the NIH did a session on the need for newborn screening and the ethics behind it. Both session were very interesting, especially the hope that cord blood stem cells offer.
The three of us went up with Dr. K for the third session. Dr. K asked us to tell how Ashleigh was diagnosed, how we found out about Duke, how we decided to go to transplant and so on...then the journalist started asking questions. I was nervous at first, but after a few minutes it was okay. It is all stuff that I have said several times...just never infront of large groups of people. When the session was over, we had reporters coming up asking to call us, mostly about the need for newborn screening. We talked about the difference in Ashleigh and a newborn transplant, and the children who were not transplanted. Dr. K stressed throughout the day the need for newborn screening. Oh, Dr. K had me tell them about Mackenzie's baby doll that has Krabbe as a way to show the effect it has on the family members. Anyway, we walked away feeling that we taught them about Krabbe, transplant and the need for newborn screening!
A little trivia that we found interesting...the first cord blood transplant was done with blood from a sibling in France but the child was from North Carolina. FDA would not allow it here so the child went to France. The first UNRELATED cord blood transplant was done at Duke. We saw slides of children we know...Haley, Henry, and the Jarrells. We also saw how the cord blood is collected and different grafts about the success rate of cord blood vs bone marrow.
Another interesting lesson...Embryonic Stem Cells were injected into the brain of a patient with Parkinson's, they thought is was a mircle cure...the patient regained all of his skills...however a year later the complications caused more damage and the patient was in worse shape. The treatment was not successful and they are attempting it with cord blood.
After the conference we went to dinner with Dr. K, June and the student. We had a good time, talking about medical stuff along with some social stuff. We planned a pretend party for a fund raiser...silly stuff. Dr. K commented several times on how well Ashleigh was doing being out, she didn't cry or startle at noises...She stayed awake, looking around. Ashleigh really enjoyed being in public! It was nice to have her enjoy such a simple thing.
Howard, Ashleigh and I went back to our hotel and lounged around...then got up in the morning for the long ride home.
Oh...when the doctor from NIH was talking, Ashleigh started laughing and just kept getting louder. Everyone started laughing and he had to tell her that he was a doctor and a grandfather...he could talk over her laugh. It was great!
Thank you all for your words of encouragement, emails, phone calls and post in the guessbook. God Bless.
Tuesday, March 29, 2005 11:16 AM CST
Ashleigh had a tough day yesterday. I cancelled her aquatic therapy and we just stayed home. Early in the morning she started crying and shaking on and off for about two hours. I gave her a high dose of Ativan (sedative and seizure medication) and it went away. She slept most of the day and was junky. I suctioned her a bit, she then started wheezing. I put her on her pulse ox and called Sue. She had me give Ashleigh a breathing treatment, checked her drug levels and said that her topamax was low. We have enjoyed seeing Ashleigh awake and moving so much, however if the seizures come back we will have to increase it. If Ashleigh continued to wheez and had more seizure activity then I had to take her into the hospital. Thank God it all cleared up and she is doing well. Still a little sleepy but it will take a day or two to sleep of the seizure activity.
If you missed the newspaper story about Krabbe/newborn screening and Ashleigh check out the journal history.
Dr. K has invited us to join her in a conference on Friday. Howard, Ashleigh and I will be going to North Carolina on Thursday and meeting Dr. K on Friday to go to a medical conference. Below I posted Dr. K's email saying what it is. We are very nervous but excited!
"The conference is called: 6th National Conference of the Association of Heath Care Journalists. Our session is called "The Last Hope: Stem-cell transplants for Sick Children". The audience is about 100 health care journalists from around the country who want to learn more about cord blood transplants, the diseases we transplant, the controversies about stem cells and what parents go through when they learn about a diagnosis like Krabbe, how they make decisions about transplant etc. I think this will be a great time to get them interested in newborn screening too"
Wish us luck.
Don't forget to sign in and let us know you were here, we love reading the guessbook entries to Ashleigh. :-)
Saturday, March 26, 2005 2:06 PM CST
By KRISTA LARSON
Associated Press Writer
March 26, 2005, 9:20 AM EST
HARRISON TOWNSHIP, N.J. -- Michelle Gwin worried about her infant daughter's crankiness. Babies cry, she was told. Then there were other troubling signs: Ashleigh stopped holding on to her bottle; she didn't want to hold up her head.
Her alarmed parents brought her in for tests, and eventually were handed a devastating diagnosis at only 7 months old: Ashleigh had Krabbe (krahb-AY) disease, a genetic disorder that is usually fatal by the age of 2 unless treated successfully.
Ashleigh, now 28 months old, has since undergone a cord blood transplant, which aims to halt the degenerative disease's progression. That procedure, though, could not undo the damage the disease caused in her first months of life.
Newborns are not routinely tested at birth for Krabbe disease unless their parents have previously had another child with the illness. Gwin, 32, believes newborn screening could spot cases like Ashleigh's, where no history of the disease is present in a family.
"If Ashleigh wasn't treatable, newborn screening wouldn't have done anything for her," her mother said. "But because she was treatable and she wasn't treated in time, she's in that wheelchair."
Krabbe disease hinders development of the myelin sheath, a fatty covering that protects the brain's nerve fibers. Unless treated, it eventually causes children to lose mental and motor function. Most become blind and deaf, and are left unable to move or speak.
A pilot project in New York is aimed at perfecting a screening test that eventually could be given to all newborns.
"We feel hopeful that within the next year or two, they'll be testing for Krabbe disease," said former Buffalo Bills quarterback Jim Kelly, who founded Hunter's Hope Foundation with his wife, Jill, after their son was diagnosed in 1997. "We keep on pushing and hoping."
In the meantime, they have joined with parents of children with other disorders in urging states to expand and improve their newborn testing programs.
In New York, the total number of diseases tested will expand to 44 later this year. And in Kentucky earlier this month, a bill signed into law expanded the number of disorders tested from four different illnesses to 28. The act is partly named for Madison Leigh Heflin, a 3-year-old with Krabbe, whose father lobbied state legislators.
"There isn't much I can do for Maddie, but I felt the only thing I could do for her was to help save other kids," said Jason Heflin, 32, of Lexington. "Something just told me that the one thing I could give her was knowing that no other family or kid would have to suffer through this."
New York state's pilot screening program, which started in January, is progressing well, said Robert Kenny, a spokesman for the state health department.
"Krabbe disease requires use of uniquely different technologies and we are now completing leading scientific research that will help us develop and perfect a test we can use in our newborn screening program," Kenny said.
Parents hope other states will follow. Until about eight years ago, no treatment existed for Krabbe disease. Now children can undergo cord blood transplants if diagnosed early enough, although the procedure requires chemotherapy and comes with the risk of complications.
At least a dozen children have undergone transplants shortly after birth, including Degan Miles, who will turn 2 in June. He was diagnosed before birth because his parents had previously lost a daughter, Megan, to the disease.
"By the time she (Megan) was Degan's age, she was already on oxygen, she couldn't move at all or express how she was feeling," said Lori Miles, 29, of Grand Junction, Colo. "He's moving and crawling and getting into things and laughing and talking. It's just amazing _ what a total difference."
Another child who had a transplant shortly after birth, 5-year-old Gina Rugari, will start kindergarten in the fall. She already knows the alphabet, her colors and numbers, although she uses a walker because she suffered some early nerve damage from the disease, said her mother, Anne Rugari, 47, of Edgewood, Ky.
"This is why newborn screening is so vitally important because this is a neurological disease, this is a time bomb ticking," said Rugari, whose son Nick died from Krabbe disease in 1987.
Micki Gartzke's advocacy efforts for newborn testing also began with a heartbreaking loss. Her daughter, LeA, died of Krabbe disease in 1998. Another boy she knows, born just 10 days earlier, got tested at birth because his sibling had been previously diagnosed with the disease.
"He's in first or second grade now, and my daughter's been in her grave six years," said Gartzke of Shorewood, Wisc., now director of education and awareness for Hunter's Hope. "That's a pretty clear picture to me that these kids deserve a chance."
For little Ashleigh Gwin, who underwent a cord blood transplant at 9 months old, it's now a waiting game before it's known how she was affected by the disease before her transplant.
"She's already doing more than they thought she would," her mother said. "And I just believe that future science will come up with something that will better heal her
Friday, March 25, 2005 2:25 AM CST
Sorry for taking so long to update.
I am not sure where to even begin. You might want to grab a cup of coffe and snack...this is going to be a book!
Saturday night Ashleigh had a tough time. Crying for 5 hours, I tried everything to calm her but nothing was working. I called Dr. Renwick, we talked about admitting her for test but decided that it would be very risky because of Ashleigh's weakened immune system and the number of contagious children under Dr. Renwick's care. Dr. Renwick is a general pediatrician who primarily treats handicap children. We decided to give Ashleigh an extra dose of Ativan, thinking it was Krabbe irribility. We made a plan that if she continued to cry after the Ativan that I would call back and we would go to the hospital. Luckly, Ashleigh went to sleep.
Sunday we left for Duke. Ashleigh was feeling better and it was an uneventful day.
Monday at Duke...Ashleigh had a nerve conduction test, blood work and saw Dr. Greene, the eye doctor. We had a slight scare with the blood so we had to rerun the test. Ashleigh didn't want to share her blood so it took a bit to get the blood, causing the cells to burst, so her levels came back very low. They called us to come back and give more blood. We were very nervous because her hemoglobin was dangerously low at 5.9 and since Ashleigh has not had a transfusion in 9 months it could have been a sign of something very bad...but it was all a false alarm and her second blood draw came back fine. Yeah! Ashleigh nerve conduction test was stable, no farther damage! Yeah! Her vision, which we were very concerned about, came back stable also. The things we are seeing are most likely related to medications. Today, I got the report from Dr. Greene and I didn't understand it so I emailed Dr. K for her to explain it. She has not seen the report so she will check the office in the morning and then call me.
Monday night we went to celebrate Jackson White's second birthday. We had a yummy dinner, cake and present for Jackson, who by the way...has the best smile! We enjoyed the company of D'Anne and Marshall (Jackson's mommy and daddy) and Kelly (Hunter's Hope family support and Angel David's mommy).
Tuesday was crazy! It started with a 8 am appointment with Dr. Escolar and her team of therapist. Ashleigh was evaluated by a PT, speech, a few other therapist and had a hearing test. Then Dr. Escolar came in and examined Ashleigh. She thought Ashleigh looked great. Ashleigh was kicking her legs and moving. She was happy that Ashleigh was communicating with us with different noises and cries. She also thought Ashleigh looked more alert and healthy they she did last time we saw her in August. It was a great visit. I will give you more details after we recieve her report in a couple of weeks.
We then went to clinic and had a hip x-ray, requested by Dr. Escolar. Ashleigh's hips are in the socket however they are not completely formed because they are not used enough. We will have to keep an eye on them and Dr. K is going to talk with an orthopedic about it. The hospital that we use when we are home is know for orthopedic so I am very comfortable with treating with them for any issues that Ashleigh may have.
Ashleigh then started her IVIG. She also had a skin biopsy to try to identify Howard's mutation. This is absolutely needed if Howard and I decide to try IVF. The biopsy was really gross. They numb Ashleigh with an ointment and then a needle so she would not feel it. They then punctured a cirle into Ashleigh thigh, with a pair of tweezers they pull out the skin inside the circle and cut it off. They also took blood from me and Howard. It was all sent to Dr. Kolody at NYU. It can take up to six months to find the mutation but he is fairly certain that it can be done. We then saw Dr. K, who was very please with how well Ashleigh looked. By this time, Ashleigh was sound asleep to Dr. K just looked over her skin and talked with us. Giving Ashleigh a break from her very busy day. Dr. K said it was very rare to see children like Ashleigh moving so much and she too was pleased with the progress that Ashleigh is making with her therapy. She requested us to increase her therapy schedule, so we added another day of aquatic and will talk with our therapist to their availablity.
We drove home Tuesday night after clinic. Dr. K was also very happy with the results of Ashleigh's immune functions. It is almost back to normal. Ashleigh will still have to wear a mask and we will still have to keep her isolated but we can relax a little. What that means...I don't know, I am not willing to take a chance. She is not vaccinated and can not be for at least another year. We still have some restriction like no grocery stores, alot of people, church are still a no but we are getting there. We can start going to small places, no crowds, good air circulation...Ashleigh can not go near children who are vaccinated or smoke. She is still at high risk for infections. I know it doesn't really sound like anything changed and it won't seem different until we are able to vaccinate her. However, she can not have vaccines until we are able to get her off of FK506, which can't happen until we are able to control the graft vs. host. I say a year, but that is really just a guess. Some children are five years out and still battling GvH, some are a year out and off of medications. Ashleigh is 19 months post transplant.
Wednesday, Ashleigh had off. We let her sleep and just relax after such a busy couple of days. I went to pick up Mackenzie from Howard's mom's to take her to her Easter party at school and then to dance. However, as we were walking out Mackenzie threw up and we ended up staying home. Mackenzie got sick one more time and we kept her away from Ashleigh.
Today, Mackenzie stayed home and Ashleigh had PT. A great session however, she did not like her stander today. Kate gave her a great stretch and some belly time. Oh, Dr. Escolar was also concerned with the tendons in the back of Ashleigh's knee being too tight. We are going to try to relax them with therapy, but if that does not work Ashleigh may need surgery to cut them. Hopefully, with PT and aquatic we can relax them.
We are going to enjoy the weekend together...we are having dinner at my friend Sarah's (aka: Ashleigh's speech therapist) and Saturday we are hoping to go out but the weather does not look good so we might just have family day with movies and games and pj's (sounds great to me).
Easter Sunday, we are going to have baskets, giggles and an egg hunt...then more giggles. We are going to Howard's mom's for dinner. Monday...Mackenzie has school and Ashleigh is back to therapy.
As you know this is a very difficult time of year for us as we are coming up on Ashleigh's anniversaries of this journey. We feel like we are in a better place this year, it is still difficult but Ashleigh has come so far and she is doing so well. We see the HOPE everyday when she learns a new skill or does something that she has been unable to for over a year. I have FAITH that Ashleigh will continue to heal by the grace of God and a wonderful medical team. Thank you Sue, Dr. K, Dr. Renwick and all the therapist who work so hard.
Thank you fo all of you for your continued support, prayers and love.
Check your Sunday paper! In January, I did an interview with Krist Larson, a reporter from the Associated Press. She is doing a story on Krabbe and newborn screening! She has also interviewed our friend James and Lori (Degan and Megan's mommy and daddy. Degan transplanted with us and Megan earned her wings) and Jason Heflin (daddy to Maddie and a huge advocate for newborn screening in Kentucky, whick is expected to be the second state to add Krabbe to their newborn screening). We will not know what papers are going to carry it but we are hoping it goes nation wide! Plus, it is in a Sunday paper! Yeah!
Okay...what else? Umm, we are going to be doing some fund raising for the Duke Pediatric Stem Cell Family Support Program. On May 7th, we are going to do the Rainbow Walk at Duke in Ashleigh's honor. If you would like to donate please let me know.
We are also working on some other fundraising for Krabbe research, finding a cure for children in the future and looking for better ways to help children like Ashleigh, our way of honoring her life, struggles and achievements. I will let you know what we come up with but it will be lots of fun.:-)
Well, my finger hurt from typing and it is five in the morning so I better get going.
Thank you and God Bless.
Friday, March 18, 2005 4:06 PM CST
Well...we narrowly avoided being admitted to the hospital.
All week Ashleigh's body temp. has been up and down. It would go down without Tylenol so I thought it was the Krabbe causing her temp to be unstable. She also has a very strong smell to her urine. Yes, she has a positive urine culture...well, blood and white cells are present but we don't know type of infection yet. The cultures are pending. They also cultured her blood, drew labs...none of which are back yet. The doctor we saw today wanted to admit her but we are due to leave Sunday for Duke. I am going to run IV antibiotic at home and then take it with us to Duke.
Of course, if her cultures come back really bad we will have to cancel our trip to Duke and be admitted.
duPont Hospital took such good care of her today. They are always great with Ashleigh and patient with me! A million thanks to them...
Before all of this happened Ashleigh had great Aquatic and feeding sessions. Sarah had Ashleigh moving her mouth and sticking her tongue out. She even drank a little formula for a special pacifier. Michelle thinks Ashleigh is moving more and more every week in the pool. They are both very pleased with Ashleigh's progress.
Have a wonderful weekend.
God Bless.
Friday, March 18, 2005 4:06 PM CST
Well...we narrowly avoided being admitted to the hospital.
All week Ashleigh's body temp. has been up and down. It would go down without Tylenol so I thought it was the Krabbe causing her temp to be unstable. She also has a very strong smell to her urine. Yes, she has a positive urine culture...well, blood and white cells are present but we don't know type of infection yet. The cultures are pending. They also cultured her blood, drew labs...none of which are back yet. The doctor we saw today wanted to admit her but we are due to leave Sunday for Duke. I am going to run IV antibiotic at home and then take it with us to Duke.
Of course, if her cultures come back really bad we will have to cancel our trip to Duke and be admitted.
duPont Hospital took such good care of her today. They are always great with Ashleigh and patient with me! A million thanks to them...
God Bless.
Sunday, March 13, 2005 4:13 PM CST
NEW PICTURES!!
Ashleigh is doing well...not much to update on. Last night we had family game night...popcorn, Candyland, Monoply Jr.,
Great States Jr. and Don't Spill the Beans.
Friday...we went to the hospital for therapy. Ashleigh did wonderful in the pool. She is really enjoying it. There are new pictures of her in the pool. She is moving more and lets you know when she is stretched. She then had feeding therapy. She had such a great session, moving her mouth. Sarah, therapist, commented on Ashleigh's ability to stick her tongue out. It is a skill that usually shows up at 4-6 months and Ashleigh is constantly doing it...I am guessing she just discovered it because it is a game she is enjoying...she even licks when you try to kiss her.
We are hoping the weather breaks soon so she can enjoy some outside time. Hopefully soon...
Not much more to report.
There are alot of very sick kids at Duke right now...please keep them in your prayers.
Thank you...
God Bless.
Thursday, March 10, 2005 8:43 AM CST
Ashleigh is not feeling well...we are not sure what it is. Nothing serious, maybe a little cold. We are keeping a close eye on her.
Two of our friends in your prayers, they earned their wings this week...
One day I was sitting in fish tank, waiting for our visit with Dr. K, there was a family in there with me. I could tell the child had a leukodystrophy, the way his body was, his wheelchair...we talked for a while, I gave them a newborn screening bracelet. Christopher has a sister, named Ashleigh (even spelled the same way). Christopher was having alot of difficult and the family was preparing to take him back to Scotland. Christopher Keenan is an angel and we feel very blessed to have known him. http://www3.caringbridge.org/nc/christopherkeenan/
Sara Thackray lost her battle with ALL (leukemia). She fought so hard, she is now an angel playing and running with her sister, Tia. I do not know this family, although we were at Duke at the same time, I have only followed her web site.
Please pray for Ashleigh, these angels and their families and all the children for fight so hard...
God Bless.
Saturday, March 5, 2005 7:30 AM CST
Apparently, Ashleigh is not going to be happy until she scares all of our therapist away...
Ashleigh did great in Developmental Therapy this week. Sue (therapist) is so great with her. They read a book on tape. The great part is that Ashleigh played the tape with a switch. She decided she wanted to hear it and would play it, take a break and then play it more. Lucky for us...Ashleigh didn't misbehave for Sue.
Friday, we saw Dr. Renwick. She thought Ashleigh's chest was clear and her ears look better although they are still very full of wax. We then went to Aquatic Therapy...oh it was so great. Ashleigh was awake the entire session, wide eye and completely enjoying the pool. I have some great pictures that Howard will post this weekend...promise.
Ashleigh had a hour break in between her therapy sessions so we had lunch with our friend Sarah. After lunch we met with Dr. Falchek (he is the neurologist that walked into Ashleigh's room and said to start looking for a leukodystrophy, she had a disease in her white brain matter). Even though we have a difference in opinion about transplant and treatment, he is the doctor who quickly diagnosed her. We met with him about Krabbe (spreading awareness), newborn screening and buildin support for families in similar situations as us. The hospital that we use has diagnosed 2 more Krabbe kids since Ashleigh. Plus, MLD and ALD... I passed out Newborn screening bracelets and Hunter's Hope information throughout the hospital all day, leaving a pile with the neurologist. I am hoping to meet with the genetic doctors next week.
Okay on to our scare for the day...Ashleigh then had speech therapy with Sarah (friend from lunch). She was doing well, a little junky so I suctioned her a few times. She did some massages in and around her mouth. Used flavored gloves (we use them alot) for sucking, used flavor sprays (again, Ashleigh uses them often at home), had a taste of vanilla pudding (one of her favorites)...Sarah noticed Ashleigh bottom lip was a little larger. We thought it was because she had some dry skin that had just come off...we watch it and her tongue and chin changed also. Sarah called Dr. Renwick (who is the same building but she was covering the E.R. now) She wanted to see Ashleigh so...off for some benadryl. Yes, Ashleigh had another reaction. We don't know what too. All of these items she has had countless times, however with the change in her immune system, she is just able to react to them. Before, Ashleigh's immune system was too weak to react to things. Sarah was upset, but she doesn't scare easy and we will be back next week! We are going to start treating Ashleigh like a newborn eating the same thing 3 days in a row and starting with baby food, stage one, veggies first. Ashleigh is not going to be happy because she has a sweet tooth but...she needs to behave!
So needless to say...a very exciting week! Thank God it was not anything too serious. How blessed we are!
Tuesday, March 1, 2005 6:33 PM CST
Ashleigh loves to keep us on our toes...she was thinking today one of two things...she was bored and needed some excitement or her therapy session was too long.
We started the day with a new therapist. She was great, took her time and explained things and put Ashleigh in new positions. Well...I wouldn't blame this poor woman if she never wanted to come back after the day that Ashleigh gave her...
We put Ashleigh in her stander and took her in the kitchen for some water play. I said that we could try some food products also (she played in cool-whip and pudding in the past). I put some redi-whip on a plate and her therapist (Ann) was moving her hands in it. I took her hand up to her mouth and let Ashleigh taste it. All sounds great huh?
Ashleigh's hands turned red and she got welts all over them. Her fingers started to swell up. We rinsed her off and I put benadryl cream on her. It moved up her arms to her elbows...then I was getting nervous. I called paged Dr. Renwick, called Howard's mom to have someone pick up Mackenzie, and called Howard at work for him to come home.
My concern was that I put some in her mouth and I was afraid that her airway would close off.
We went to see Dr. Renwick and Ashleigh was fine. We gave her some benadryl and she has been sleeping all day. We are home and doing great.
Can you imagine this therapist is working with us for the first time and this happens? I feel terrible and I can just imagine what is going through her mind...
Well the good news to come out of this...
Ashleigh's immune studies are not back yet, but in order for her to have a reaction like this...she must have a working immune system. It does not tell us how strong, or to what level it is working, but we know that at least some parts of it work. She is still on immune surpressing medications so we know it is not 100 percent!
Well...I hope you had a great day and it wasn't as eventful as ours. :-)
God Bless.
Tuesday, March 1, 2005 8:04 AM CST
Everything has been going well.
We are doing the Rainbow of Hero's walk at Duke this year...If anyone would like to sponsor our team, please let me know. It is May 7th in North Carolina. It is my mother's day gift to go there and be with some of the most incredible people...families, doctors, nurses and friends that we have spent the last 18 months...our way to honor Ashleigh's journey. If anyone wants to join in and walk let me know....:-). The money raised with support Duke Pediatric Stem Cell Program's Family Support.
They had parties for Mackenzie to attend with other siblings and have food delivered to the unit for families. They also are working on building Hope Lodge. Housing for transplant families to stay at after transplant and when they return for testing. It will be free for the families and will have a huge support system for them.
Ashleigh is still requiring suctioning and at times some oxygen, but she is much more alert and active.
Mackenzie went to school yesterday but I picked her up early because of the snow. She was cute...she said it was snowing so much because all the angels in heaven were having pillow fights and the snow was the feather coming down. She is so sweet.
I thought it was a great day to look at the snow that way, it was the anniversary of Ross Joiner earning his wings. I laughed at Kenzie. Of all days to say that....I can really picture Ross and his big brother, Trevor having pillow fights and laughing. A beautiful thought for such a wonderful pair of boys.
I have been thinking alot about the angels that we have met along the way, most recent Candace. Candace earned her wings last week. A little while before she passed her pastor was holding her and said that it was amazing to look in the face of an angel, who in a short time will be face to face with Jesus. That has brought alot of peace to the family and a clear vision for me. I don't know the pastor but I thank him.
I also wanted to share with you the Angel Bree was given a tree by her funeral home. A beautiful way to remember such a precious and sweet angel. I am so amazed that they were so caring and giving to Bree's family, yet after being touched by such a beautiful angel...I am sure she left a mark on each person's heart...I know she did mine.
I don't know God's plan, none of us do. I often wonder what Ashleigh's mission on earth is. I have said several times that I wish I knew the purpose...why does Ashleigh have Krabbe, why was she able to have the transplant, why did she survive it....only God knows those answers and only God knows what Ashleigh's mission here on earth is, only God knows when she will enter eternity and be with Him. So many children...too many...parents left empty.
Please keep these sweet Angels and families in your prayers.
Thank you for all you have done, sometimes...I know I should say it more. Your support and prayer for our family have carried us so far. Thank you for coming here and reading Ashleigh's site, checking in on her and praying for her complete healing. Thank you for the messages you send us, the kind words and love...we do read each and everyone of the post in the guessbook and private messages sent to us. I am sorry that I can not respond to each of them...
Please continue praying for Ashleigh and her friends, for all the children on 5200 and for the medical staff who treat them. Thank you.
God Bless.
Sunday, February 27, 2005 3:39 PM CST
Sorry for yet another delay in updating...
Ashleigh's Duke visit went well. Dr. K was very happy with the way Ashleigh looked. Her skin is pretty clear, very little graft vs host. Even her scalp looks good, she is starting to grow hair in the back and sides of her head (it keeps falling out from the GvHD). She is moving more and she is much more alert. Smiling and interacting with us more each day. She has invented her own little games to keep our attention, like taking her pulse ox off so we run in her room and then she smiles. We do have concerns about her increased secretions. I am suctioning her constantly, with very thick mucus coming out of both her mouth and nose. We are keeping her pulse ox and oxygen at close hand, just in case. She has gone 4 days without requiring oxygen. Her viral battery test was negative, so we were thrilled that there in not an infection causing this, now we have to try to figure out what it is so we can better treat her Her weight is stable and she has grown 2cm. Ashleigh's EEG did show a few very high spikes, which would be seizures if her medications were not at a therapeutic level. Dr. K told us to keep a very close eye on any unusual movements, activity or increased sleeping...all could be the result of seizures. Of course, our most wonderful news is that Ashleigh's protein has come down, from 254 to 176. The protein in the breakdown of the myelin in the brain, it shows up as protein in the cerebrospinal fluid. A normal level is about 50. Ashleigh' level coming down is an incredible step forward in Ashleigh's healing process.
After we returned home, we received a package of information from Kennedy Krieger Institute. Dr. McDonald is the Director of Neurological Development at Kennedy. He is the doctor responsible for the feeling and movement that Christopher Reeve had regained before his death. We are trying to set up our appointment to start treating with him as part of Ashleigh's recovery process. He offers us much hope for Ashleigh's future.
Ashleigh will be starting her new therapy program this week. We are still scheduling a few things, like OT, vision, and speech therapy. We are also only able to have feeding and aquatic therapies once a week because of availabiltiy with the therapist. We are hoping to increase them soon.
Ashleigh is scheduled to return to Duke the week of March 21st. She will be scheduled for a MRI, Dr. Escolar (developmental doc), Dr. Green (eye doc), pulminary function, and nerve conduction. She may get a skin biopsy done during that visit also. This is the only way to identify the mutation that is in Howard's family. By doing so, it will offer hope for Howard and I to have more children and for his sisters and neice to have children without the fear of Krabbe. To decrease the risk of Krabbe and offer a child a healthy and positive life is our only hope for everyone involved...to prevent a child from what Ashleigh has been through and to honor Ashleigh's journey by saving children from suffering.
Mackenzie stayed with her mom-mom while we are at Duke. She has a blast, getting very spoiled. Her mom-mom just had surgery so Mackenzie said she took care of her. Kenz has become so loving and caring. I am so proud of her. So, she is still talking about her trip to mom-moms and she can't wait to go back to watch movies in bed and snuggle. Mackenzie is still having problems going to school, she just doesn't want to leave me and be in large groups of kids.
I have started several times to ask you to pray for different people...the children who are fighting diseases, the angels that have left this earth too early, for the parents who are left with empty arms, and the parents who are facing the most difficult choices. Please pray for peace and HOPE for all children who suffer.
God Bless.
Wednesday, February 23, 2005 9:03 AM CST
Sorry for not updating yesterday, but we have been so busy. Both with test and seeing great friends.
Yesterday...we went to clinic had Ashleigh's labs drawn which included her normal weekly (now monthly) labs and her donor count. We have her enzyme level back, it was 3.9...lower than her last but if you remember, it is normal for it to jump around. We are still waiting for her immune function results to come back (they take a 5 weeks and we did them the beginning of February, so we should have them soon). After her blood work, Ashleigh had her montly dose of IVIG. It took two hours to run, so they did a viral battery at the same time (they just take some secretions from her nose to test for viruses), then we went to the procedure room for a Lumbar Puncture (spinal tap). Dr. Kurtzberg did the procedure for us. Ashleigh was not happy about the position that she was held in but she did not cry, just fussed to argue a minute. Dr. K was fast and everything went smoothly. Ashleigh's pressure was normal. I will tell you more about it in a minure.;-)
We left clinic and we went for a echo of her heart. This takes about 5 minutes and she just lays on a bed...it is done like a ultra sound. Ashleigh then went for a chest x-ray to make sure we are keeping her lungs clear with all the secretions she has been having.
Okay...the great news. AFter the test...we went back to see Dr. K for an exam and talk...All of Ashleigh's labs look good. Nothing grew from the viral battery (none of the rapid stuff came back positive, but cultures will take 24-48 hours). We are now looking for other things that could be causing Ashleigh to have these breathing problems. Dr. K thought Ashleigh looked good neurologically. She was pleased with her skin, but did not want to make any medication changes yet, maybe next month. Dr. K did a DNA of Ashleigh's mouth so we can look for the mutation that is in Howard's family. When Ashleigh was diagnosed they identified my mutation, however...Howard carries a rare deletion and it could not be identified...it is very important that we find this out for us to have more children and/or for Howard's sister's to be tested. By having the mutation, they could rule out if his sister's would be at risk to have a Krabbe child and giving us options to have a healthy child. A wonderful doctor at NYU is doing the test for us, looking into Ashleigh and Howard's DNA. Ashleigh's blood will not show the mutation because she has her donor's blood and is Krabbe free in her blood, however, you can not change DNA and it is in her skin cells. If this does not work then Ashleigh will have to have a skin biopsy next month when we come for more appointments. Please pray this works, we don't want to give an opening for infection to enter Ashleigh. If she does need it, she will be treated with very high dosese of antibiotics to protect her.
Okay...part of the lumbar puncture is to check the amouth of protein in the spinal fluid. The protein is the de-myelination of the brain. Normal levels are around 50. Ashleigh's last one was 254. The one that was done yesterday came back as 176! It is another sign that Ashleigh's brain is healing and she is doing an amazing job at beating Krabbe. This news is just incredible and we could not be happier to hear it! So, please celebrate with us and thank God!
Right now, Ashleigh is getting her Kid Kart adjusted and her new stander is here. We are then going to be heading for a EEG and evoke potential. Ashleigh loves this because they massage her head. Who wouldn't like a scalp massage?!
We then have a meeting and then we are having dinner with some friends...
I will update the results of the EEG as soon as we have them...pray for no seizure activity.
Thanks.;-)
God Bless.
Wednesday, February 23, 2005 9:03 AM CST
Sorry for not updating yesterday, but we have been so busy. Both with test and seeing great friends.
Yesterday...we went to clinic had Ashleigh's labs drawn which included her normal weekly (now monthly) labs and her donor count. We have her enzyme level back, it was 3.9...lower than her last but if you remember, it is normal for it to jump around. We are still waiting for her immune function results to come back (they take a 5 weeks and we did them the beginning of February, so we should have them soon). After her blood work, Ashleigh had her montly dose of IVIG. It took two hours to run, so they did a viral battery at the same time (they just take some secretions from her nose to test for viruses), then we went to the procedure room for a Lumbar Puncture (spinal tap). Dr. Kurtzberg did the procedure for us. Ashleigh was not happy about the position that she was held in but she did not cry, just fussed to argue a minute. Dr. K was fast and everything went smoothly. Ashleigh's pressure was normal. I will tell you more about it in a minure.;-)
We left clinic and we went for a echo of her heart. This takes about 5 minutes and she just lays on a bed...it is done like a ultra sound. Ashleigh then went for a chest x-ray to make sure we are keeping her lungs clear with all the secretions she has been having.
Okay...the great news. AFter the test...we went back to see Dr. K for an exam and talk...All of Ashleigh's labs look good. Nothing grew from the viral battery (none of the rapid stuff came back positive, but cultures will take 24-48 hours). We are now looking for other things that could be causing Ashleigh to have these breathing problems. Dr. K thought Ashleigh looked good neurologically. She was pleased with her skin, but did not want to make any medication changes yet, maybe next month. Dr. K did a DNA of Ashleigh's mouth so we can look for the mutation that is in Howard's family. When Ashleigh was diagnosed they identified my mutation, however...Howard carries a rare deletion and it could not be identified...it is very important that we find this out for us to have more children and/or for Howard's sister's to be tested. By having the mutation, they could rule out if his sister's would be at risk to have a Krabbe child and giving us options to have a healthy child. A wonderful doctor at NYU is doing the test for us, looking into Ashleigh and Howard's DNA. Ashleigh's blood will not show the mutation because she has her donor's blood and is Krabbe free in her blood, however, you can not change DNA and it is in her skin cells. If this does not work then Ashleigh will have to have a skin biopsy next month when we come for more appointments. Please pray this works, we don't want to give an opening for infection to enter Ashleigh. If she does need it, she will be treated with very high dosese of antibiotics to protect her.
Okay...part of the lumbar puncture is to check the amouth of protein in the spinal fluid. The protein is the de-myelination of the brain. Normal levels are around 50. Ashleigh's last one was 254. The one that was done yesterday came back as 176! It is another sign that Ashleigh's brain is healing and she is doing an amazing job at beating Krabbe. This news is just incredible and we could not be happier to hear it! So, please celebrate with us and thank God!
Right now, Ashleigh is getting her Kid Kart adjusted and her new stander is here. We are then going to be heading for a EEG and evoke potential. Ashleigh loves this because they massage her head. Who wouldn't like a scalp massage?!
We then have a meeting and then we are having dinner with some friends...
I will update the results of the EEG as soon as we have them...pray for no seizure activity.
Thanks.;-)
God Bless.
Sunday, February 20, 2005 12:44 AM CST
Sorry for the delay in updating...
Thursday, Ashleigh had her intake meeting for Early intervention. It went well. She is going to be getting Physical, Developmental, Speech and Vision therapies from them. She will get feeding and aquatic therapies at the hospital twice a week also. We went to look at houses...none were what we were looking for. This is not as fun as we thought it would be...there are too many special need things we are looking. That we just can't find...a staircase that we can put a lift on or a rancher, a extra bathroom to make handicap accessible for Ashleigh. A extra room for therapy. Ability to add a sunroom for a hot tub for Ashleigh's therapy.
Thursday night, Howard was bathing Mackenzie and noticed her vaccine spot broke out with a rash. Called her doctor...decided to keep an eye on it and it is fine now.
Friday, I don't really remember.
Saturday, I had a pancake breakfast for the military to work at so Howard's mom and neice watched Mackenzie and Ashleigh for a few hours. We came home and relaxed, watched movies, colored...had dinner and went to bed.
Today...I had to suction Ashleigh alot. She is now sleeping and I am taking a break from packing for Duke. Mackenzie is watching Pajama Party Barney (yes, Barney!) because she is going to sleep over her mom-mom's for three days so she wanted to "learn" about slumber parties!
We leave tomorrow morning for Duke, we have a light schedule so we will only be there until Thursday unless something else is added on to our schedule. We are hoping to add a MRI, viral battery (testing for illness in her secretions...would explain all the suctioning) and a chest x-ray (because of all the suctioing, I'd like to make sure we are keeping her lungs clear).
When we get back, Ashleigh will start her new therapy schedule, see her doctor her every other week and hopefully the whole family will be on a "normal" schedule and set in a routine!
I will update after our appointment with Dr.K on Tuesday.
Thank you for all your support and prayers.
God Bless.
Wednesday, February 16, 2005 10:25 PM CST
There is only one word to discribe this week...Busy!
Monday, Mackenzie felt better and went to school. I stayed home and made phone calls for Ashleigh's care.
Tuesday, we went to the hospital for both girls to have check ups from Dr.Renwick (Mackenzie calls her Dr.Amy, the best doctor ever). Mackenzie had a complete physical, which she hasn't had in a long time. She did recieved two shots (neither were live, for we can't received live vaccines because of Ashleigh's immune system). She had a hearing test which she did well and a vision test. She did not do well on the vision. She asked the nurse to make the picture bigger for her to see it. We are going to go the the eye doctor to see if she needs glasses. How cute will she be in glasses, but how do I get her to wear them. She is 35lbs, and 3'5".
Ashleigh was started on antibiotics. She has an ear infection. I am also suction up yellow mucus so we are just being safe. Overall Dr.Renwick thought she looked good. Some skin GvH, which we are treating with Protopic. Her weight was down a little. Junky sounded with secretions. I had to stop 3 times on the way to the hospital to suction her. I have never had to do that before. She has required suctioning several times a day for a week now. Ashleigh also had a consult for Aquatic therapy. She did well. She really seems to enjoy being moved around and even smiled a few times for the therapist, can't tell Dr.Renwick...she tried so hard to get Ashleigh wouldn't. We are hoping to start Aquatic and feeding the first week in March.
Wednesday, Mackenzie had dance school. She looks so cute in her outfit and she is so excited to go. The other girls in her glass are so sweet to her and ask me questions about Ashleigh's mask. I am so happy to have a "normal" activity for Mackenzie to get away and do.
Ashleigh had a busy day...appointments and therapy consults. It has been crazy.
Howard's mom is home from the hospital, thank you for all the prayers you sent for her.
Tomorrow, Ashleigh has developmental therapy at 8:30 am, then an early intervention intake meeting. Then, we are going to look at three houses. Mackenzie has school. I have a family support meeting for the military at night. Howard and I were going to go to dinner, but I really have to attend the meeting.
We are preparing to return to Duke next week...18 month studies! Told you we have been busy...it is just crazy. I am sure it will be better once we are on a schedule and everything will run smoothly.
This seems to be coming up lately so I thought I would explain the transplant a little. If you have any questions about it please feel free to email me. Ashleigh had 9 days of chemotherapy and then received a bag of cord blood in her hospital room. Her transplant did not take place in an operating room. The blood went through her IV. She never had radiation. Some hospitals use it, but Duke does not use radiation on metabolic patients...if they did, I have never seen a Krabbe child receive it. The test that she did before transplant or when we return for studies are not painful. They are tiring for the parents to do all the running around and sometimes can make her mad at all the fussy over her and moving. Her spinal tap (LP), she is numbed for, MRI...she sleeps through. The most painful thing is the nerve conductions, which she pulls her arms and legs up a little, but she does not cry. The one test that she does cry for is called "crying capacity test"...they want her to cry to see how well her lungs are fuctioning. Please if you have questions about any of this just email me. I know when I write how much we do during these studies, some are concerned that Ashleigh is in pain, she is not...most of the time, she sleeps. Hope this helps you all understand part of Ashleigh's treatment. I honestly believe that Ashleigh would have been in more pain if we did not transplant with the stiffness of the muscles and so on...
Thank you so much for you continued support and prayers...
God Bless.
Monday, February 14, 2005 9:20 AM CST
Everything seems to be getting back on track...Mackenzie is better, she even went to school today. Ashleigh has been sleepy, but we are not over concerned. Hopefully, if she did catch something, her bone marrow is doing it's job and fighting it off...causing her to sleep more. Both girls have doctor appointments tomorrow. Ashleigh also has a Aquatic therapy consult. We are still waiting for our schedule to see when we will go to Duke, we are up in the air about leaving either Sunday or Monday. It will only be a week, promise!
Tonight we ask that everyone light a candle in honor of our children. Today is Hunter's Day of Hope for Children.
Happy Birthday Jim and Hunter Kelly! Thank you for the HOPE you give us each, sweet Hunter. You are a hero.
I don't know why today is so emotional for me today, I have already cried 3 times and it is only 10:30! Not a good sign for the day...
I can't help but think of how things were suppose to be...I know that is stupid of me, but I shouldn't be worrying about ordering medications or setting up therapy. I should have to panic everytime I have to take Ashleigh in public. Last week, I had a doctor appointment for me, I had to take Ashleigh....I was freaking out...sick, flu, infections, hospitalizations, antibiotics, IV...all going through my head! When I take Mackenzie to school...I either have to leave Ashleigh in the car...yes, freaks me out...kidnappings! or risk taking her into the school where she could get sick, infections or exposed to children who have recieved vaccines! I can not go grocery shopping at normal hours, I can not even go to the post office, without risking Ashleigh's health.
Then, I also have her medications, oxygen, suction, feeds. She is unstable enough that we always have a bag packed for the hospital and yet, our insurance company does not think we need nursing. She is not critical enough. I am guessing that if I take her out and she gets sick and ends up in the hospital on IV for 10 days...they would rather have that bill, so the deny the nursing...so the patients best interest is not what they are concerned about!
Forgive me, I needed to get that off my chest! I am just having such a hard time adjusting back into life and setting up all the care that Ashleigh needs and trying to add new services to help Ashleigh.
Good news...Howard's friend came over last night and gave us some great information to help us in search of a new home that would be better suited for Ashleigh than our 120 year old victorian. We are hoping to find a rancher but if we can't (they are rare in New Jersey) than we may get a two story and get a chair lift for Ashleigh as she grows.
Howard is working today, but we have a big romantic night, for a family of four planned...
Mackenzie and Ashleigh have a present to open for Valentines and we are going to order pizza (again), make some milk shakes and watch a valentine special with the girls. Of course, we are lighting a candle for HOPE! Mackenzie's present is a Leapster game and some candy. Ashleigh got a blow up ball pit for therapy and some Dum Dum lollipops. Mackenzie and Ashleigh got Howard a little gift (can't tell what it is yet, in case he reads this. :-)
Saturday, February 12, 2005 7:48 PM CST
Okay, welcome back to the real world...
At Duke, we live very isolated. Mackenzie played with Katie, we socialized with tranplant and Krabbe families. We rarely went anywhere.
The real world...Mackenzie started school, dance and we had Christmas with our families, as a result we are exposed to the germs that we have been lucky enough to stay safe from.
Mackenzie fell asleep on the couch last night, so I carried her up to bed. When I did she felt warm, I took her temp. and it was a little high, not bad (99.3). Two hours later she woke up crying her throat hurt. She fell asleep again on the couch, with a popcycle pressed against her face. On and off she woke up. Finally, I called her doctor and she said it sounded like strep (we knew she was exposed to it earlier in the week). This morning she woke to tell me that her throat didn't hurt as much but her body felt weird (flu?). After several calls to Dr. K, Sue and Dr. Renwick...we decided to treat symptoms and see what happens. We tried to get Tamiflu, but couldn't because the pharmacy is out of it. We tried last year for the same meds and couldn't get it.
As the day went on...Mackenzie felt a little better but Ashleigh got really sick. I was going to shower but wanted to check her first...Thank God I did. Her mouth was full of secretions and her chest looked like it was working hard. I suctioned her and went to get her pulse ox. Her oxygen saturation was only 76 and her heart rate was 170. I suctioned more and put her on oxygen. Called the doctors again. After about two hours she finally seemed to be better. I suctioned her more, but the secretions where thick and I accidently scratched her throat and started bring out blood. Well, I freaked. The ER was informed of our situation from our doctor and we packed for an admittance to the hospital. We are home now and just watching very careful.
We are watching movies and having milkshakes.
Thank you for the prayers, please keep them coming.:-)
I heard this story today and I thought it offered so much hope to children and people with brain injuries...
Brain-Damaged Woman Talks After 20 Years
1 hour ago Listen to Audio
By ROXANA HEGEMAN, Associated Press Writer
Sarah Scantlin, left, sits beside her mother Betsy and father James, ...More...
HUTCHINSON, Kan. - For 20 years, Sarah Scantlin has been mostly oblivious to the world around her _ the victim of a drunken driver who struck her down as she walked to her car. Today, after a remarkable recovery, she can talk again.
Scantlin's father knows she will never fully recover, but her newfound ability to speak and her returning memories have given him his daughter back. For years, she could only blink her eyes _ one blink for "no," two blinks for "yes" _ to respond to questions that no one knew for sure she understood.
"I am astonished how primal communication is. It is a key element of humanity," Jim Scantlin said, blinking back tears.
Sarah Scantlin was an 18-year-old college freshman on Sept. 22, 1984, when she was hit by a drunk driver as she walked to her car after celebrating with friends at a teen club. That week, she had been hired at an upscale clothing store and won a spot on the drill team at Hutchinson Community College.
After two decades of silence, she began talking last month.
On Saturday, Scantlin's parents hosted an open house at her nursing home to introduce her to friends, family members and reporters.
Dressed in a blue warm-up suit, she seemed at times overwhelmed by the attention. She spoke little, mostly answering questions in a single word.
Is she happy she can talk? "Yeah," she replied.
What does she tell her parents when they leave? "I love you," she said.
Scantlin still suffers constantly from the effects of the accident. She habitually crosses her arms across her chest, her fists clenched under her chin. Her legs constantly spasm and thrash. Her right foot is so twisted it is almost reversed. Her neck muscles are so constricted she cannot swallow to eat.
A week ago, her parents got a call from Jennifer Trammell, a licensed nurse at the Golden Plains Health Care Center. She asked Betsy Scantlin if she was sitting down, told her someone wanted to talk to her and switched the phone to speaker mode:
"Hi, Mom."
"Sarah, is that you?" her mother asked.
"Yes," came the throaty reply.
"How are you doing?"
"Fine."
"Do you need anything," her mother asked her later.
"More makeup."
"Did she just say more makeup?" the mother asked the nurse.
Scantlin started talking in mid-January but asked staff members not to tell her parents until Valentine's Day to surprise them, Trammell said. But last week she could not wait any longer to talk to them.
"I didn't think it would ever happen, it had been so long," Betsy Scantlin said.
Scantlin's doctor, Bradley Scheel, said physicians are not sure why she suddenly began talking but believe critical pathways in the brain may have regenerated.
"It is extremely unusual to see something like this happen," Scheel said.
The breakthrough came when the nursing home's activity director, Pat Rincon, was working with Scantlin and a small group of other patients, trying to get them to speak.
Rincon had her back to Scantlin while she worked with another resident. She had just gotten that resident to reply "OK," when she suddenly heard Sarah behind her also repeat the words: "OK. OK."
Staff members brought in a speech therapist and intensified their work with Sarah. They did not want to get her parents' hopes up until they were sure Sarah would not relapse, Trammell said.
Family members say Scantlin's understanding of the outside world comes mostly from news and soap operas that played on the television in her room.
On Saturday, her brother asked whether she knew what a CD was. Sarah said she did, and she knew it had music on it.
But when he asked her how old she was, Sarah guessed she was 22. When her brother gently told her she was 38 years old now, she just stared silently back at him. The nurses say she thinks it is still the 1980s.
Her father, Jim Scantlin, understands that Sarah will probably never leave the health care center, but he is grateful for her improvement.
"This place is her home ... They have given me my daughter back," he said.
Wednesday, February 9, 2005 9:35 AM CST
I am so so sorry...for taking so long for an update.
Ashleigh is fine...
Sunday night we gave a dose of Ativan and emailed Dr. K. Dr. K said to give her a second dose of Ativan and if that didn't work than we had to give her a dose of Methadone. Thankfully, we didn't have to go that far.
Ashleigh is still requiring suctioning at times.
Mackenzie started school. She did well, a little nervous but she did well. I was afraid she would be behind. Today, we are headed to Mackenzie first dance class. She said she already knows how to dance but this is so she can be in a show.
We are still trying to set up Ashleigh's therapies. Next week we have a consult to start Aquatic therapy. So far it looks like we will be at the hospital for feeding and aquatic on Monday and Friday. Tuesday, Wednesday and Thursday she will have therapy in our home, PT, OT, ST, Visual and Developmental. I am looking forward to all her care being set up and on a routine.
Please keep Howard's mom in your prayers, she had surgery yesterday to replace her knee. Sadly, Ashleigh and Mackenzie will not be able to see her for a few weeks. The hospital has a restriction on age of visitors and Ashleigh couldn't be exposed to the germs that a general hospital can have. Mackenzie is making lots of pictures and sending them up with her daddy.
Thank you for your extra prayers these past few days. We are not sure what caused the issues and what took them away. She just likes to keep us on our toes as we support, care and cherish her!
Thanks D'Anne for the talk this morning...and this update is for you. :-)
Sunday, February 6, 2005 9:04 PM CST
Ashleigh is oxygen and having alot of seizure related jerking movements. She is also requiring suctioning...
Please keep her in your prayers tonight.
God bless.
Friday, February 4, 2005 8:49 PM CST
Well, after rain, sleet, hail, and snow...we are home! It took us 9 hours to get home. It was a long drive!
Ashleigh did well during the drive, Mackenzie was happy with her movies, well...not really. After 15 minutes into the drive she said she was car sick and needed to go back to her apartment in Corth Narolina...< that is how she says North Carolina.
I had to call Sue tonight because Ashleigh is having some difficulty. She has been fussy and jerky her arms and legs. She is going through withdrawl from the Methadone and we had to increase it again. This is our third time trying to wean it and it has not been successful.
We are trying to get settled in and organize. We are trying to get therapy set up and doctor appointments. We are also celebrating Christmas with our families. I sure do miss our North Carolina friends!
Busy, Busy, Busy!
I will update soon!
Friday, January 28, 2005 6:21 PM CST
Wednesday, Ashleigh had a good morning, good PT session. By the afternoon, Ashleigh was sleeping. Again, not waking up. I put her on her pulse ox and monitored her blood pressure, oxygen, heart and temp. They were all fine, her heart was a little high, but not too bad. After about five hours, Ashleigh woke...going into 3 seizures. I called Dr. K, gave her a very large dose of Ativan and waited. If she had anymore, I had to take her in. After the large dose of Ativan, there is nothing I can do at home.
Thursday, again, another seizure and alot of sleeping. All vitals are good.:-(
Today...Ashleigh woke, had therapy (screamed through the whole thing!). I gave her some tylenol, incase her teeth were bothering her. She has been asleep since 11:00. She stretches and goes right back to sleep, not even opening her eyes. I called Sue, we are going to do a CT on her brain on Monday. Her heart rate was low earlier. Then Ashleigh had a seizure, her heart rate was then high, now it is okay, normal. Her oxygen drops to the low 90's but that can be because she is in a deep sleep. I had to suction her a few times today, while she was sleeping.
I wish I knew why this happens. We are still hoping to return home at the end of next week, Dr. K thinks it may be okay. It will depend on what the CT shows if anything.
We are scheduled to return the week of the 21st for 18 month studies. It is amazing that this journey started 18 months ago...it feels like yesterday that we were told that our baby would die, yet forever since we have been fighting for her life.
Please keep Candace in your prayers, she is in the hospital having a very difficult time.
caringbridge.org/ms/candaceangel
Help celebrate our friend Jackson growing his donor cells...27 %, yeah, Jackson! jacksonwhite.com
Thank you for your prayers and support. Please continue to keep Ashleigh and all of the children that suffer in your thoughts and prayers
God Bless.
Friday, January 28, 2005 6:21 PM CST
Wednesday, Ashleigh had a good morning, good PT session. By the afternoon, Ashleigh was sleeping. Again, not waking up. I put her on her pulse ox and monitored her blood pressure, oxygen, heart and temp. They were all fine, her heart was a little high, but not too bad. After about five hours, Ashleigh woke...going into 3 seizures. I called Dr. K, gave her a very large dose of Ativan and waited. If she had anymore, I had to take her in. After the large dose of Ativan, there is nothing I can do at home.
Thursday, again, another seizure and alot of sleeping. All vitals are good.:-(
Today...Ashleigh woke, had therapy (screamed through the whole thing!). I gave her some tylenol, incase her teeth were bothering her. She has been asleep since 11:00. She stretches and goes right back to sleep, not even opening her eyes. I called Sue, we are going to do a CT on her brain on Monday. Her heart rate was low earlier. Then Ashleigh had a seizure, her heart rate was then high, now it is okay, normal. Her oxygen drops to the low 90's but that can be because she is in a deep sleep. I had to suction her a few times today, while she was sleeping.
I wish I knew why this happens. We are still hoping to return home at the end of next week, Dr. K thinks it may be okay. It will depend on what the CT shows if anything.
We are scheduled to return the week of the 21st for 18 month studies. It is amazing that this journey started 18 months ago...it feels like yesterday that we were told that our baby would die, yet forever since we have been fighting for her life.
Please keep Candace in your prayers, she is in the hospital having a very difficult time.
caringbridge.org/ms/candaceangel
Help celebrate our friend Jackson growing his donor cells...27 %, yeah, Jackson! jacksonwhite.com
Thank you for your prayers and support. Please continue to keep Ashleigh and all of the children that suffer in your thoughts and prayers
God Bless.
Wednesday, January 26, 2005 11:11 AM CST
Clinic started really bad...after Ashleigh was hooked up on her IVIG, I started to get some toys out for us to play, but Ashleigh fell asleep. I sat and watched a movie.
After her infusion the nurse asked if she should keep her port accessed. I said no, de-access her. Well they take the tape off and take the needle out and...Ashleigh never stirs, no crying, no movement. The nurse went to get Sue and Dr. K. There was no response. The took her blood pressure, 83/54...low but not dangerous. Oxygen saturation was okay, heart rate was a little high at 143. They said to monitor her for a while and see what happens. Three hours later, Dr. K comes in and touches Ashleigh's hand...Ash peeks out of one eye and smiles. She was fine. We don't know what caused her to become non-responsive, most likely Krabbe. It is something that is going to happen and we are going to have to know when to take her into the hospital (remember in July, she did this and ended up on a vent) or when to keep her home. The problem is we won't know when it will turn for the worse and she crashes...so we will most likely always have to head to the hospital...just in case.
The rest of clinic went well...we talked about a bicycle for Ashleigh that will help with nerve damage in her legs, a bed for safer sleeping and some yes and no switches for her to learn how to answer basic questions. Ashleigh is building muscle tone, so we have to make sure it does not turn into stiffness. Alot of therapy and massages will help with that, but if we can not control it...we will have to consider Botox injections to relax the muscle. We are also trying to get into the eye doctor, he has a special machine to test vision. We are becoming very concerned with Ashleigh's vision. When we see Dr. Escolar at the end of March, we are hoping to figure out more therapy.
I lost my wallet and keys...accidently through them in the trash. Long, stupid story of how bad my brain was not working. Great clinic day...huh!?!
Kelly Brown (mom to ANGEL DAVID, Cecilia, and Brian) called and Karen(mom to >), JHYRVE and Kelly picked up food and came over for a visit. Nicole (RYAN's mommy), the White family (D'Anne, Marshall and JACKSON), Pam (Katie, RYAN, & ALYSSA's mommy), Katie and of course Mackenzie, Me and ASHLEIGH all got together at our apartment for some great company, Extreme Makeover, transplant and Krabbe talk!
This morning...we slept in. Had therapy...pretty good session and now we are just hanging around the apartment. Some visitor's may stop by later!
The doctor that we were suppose to see in St.Louis (who worked with Christopher Reeve) is no longer there. He now works at Kennedy Kreiger in Baltimore! Two hours from our house! We are calling for an appointment hopefully we can go this spring.
Oh...we are heading home! Next Thursday we will be driving back to New Jersey! :-)
Sunday, January 23, 2005 9:16 AM CST
WATCH EXTREME MAKEOVER: HOME EDITION TONIGHT ON ABC @ 8PM!
I talked with Jhyrve and her mom, Karen last night. Everyone is so excited, for Jhyrve, to see the home and to spread awareness. Karen and her son, Luke are going to a stadium to watch it (Jhyrve can not because of her weakened immune system). They are taking Hunter's Hope brochures and telling everyone about Krabbe! This is a huge campaign for them along with all families that have been touched by this disease! We ask that you and everyone you know tune in at 8 tonight, and help us spread the word about this disease!
Ashleigh has been doing well. She has been fussy and I have been spending most of my time holding her. She had a slight increase in body temp. but that came down on it's own, so most likely it was Krabbe related. She had a good therapy session on Friday, lifting and turning her head on her own! We are making plans to go home, hopefully the first week in February.
We had a girls dinner and a movie night last night, Pam, Katie and even Alyssa came up for a visit. It was wonderful company!
Thank you for your continued support, prayers and love!
Thursday, January 20, 2005 2:54 PM CST
Ashleigh went to ENT today to have her ears cleaned out and have a hearing test. Her hearing test was normal! This is the sound as it hits the ear drum. It does not tell us the connection to the brain. We already knew she could hear us! Her ears are clear of wax!
This Sunday is a big day for our friend Jhyrve and for Krabbe...
Don't forget to watch Extreme Makeover: Home Edition this Sunday, January 23rd for the Sears family show. There should be (who knows with TV land, no one has seen the final tape) talk about Krabbe disease, Hunter's Hope with Jim Kelly, and transplant with Dr. Kurtzberg. And of course the beautiful new home for Karen, Jhyrve and Luke Sears. Please remember to pass this along to everyone you know to help spread education and awareness. It will be on your local ABC station!!
Sunday, Jan. 23 at 8/7c
"Sears Family"
After a 17-year-old girl underwent chemotherapy for a rare genetic disorder, she was unable to return to her Martinez, California home because of the mold and allergens at her family's house. When Extreme Makeover: Home Edition learned of her plight, the design team and hundreds of workers put in long days and nights so that Jhyrve Sears could finally come home.
Tuesday, January 18, 2005 10:09 PM CST
NEW PICTURES!
Some people have asked about the bracelets in the above picture of Ashleigh. It is my wrist. The bracelets are for the children we have met on our journey.
The Green is the Hunter's Hope bracelet. It is for Universal Newborn Screening for children with Krabbe, other leukodystrophies (MLD & ALD), along with other lysomal storage diseases. I am selling these, if you are interested. They are a great way to spread awareness and honor Ashleigh and other children that suffer from diseases. Please think about selling them to your friends and family! They are $1 plus shipping. You can also purchase them at huntershope.org
The White...They say White and "Grow Cells Grow" (a famous saying around stem cell transplants). They are for Jackson White, a krabbe child who is having some difficulty with his cells growing. He is up to 22 Yeah, Jackson! I can also get some of these for you or you can go to jacksonwhite.com
The Yellow...Livestrong. The Lance Armstrong bracelet. They are for all the people who fight cancer. We have met many children who fight cancer and leukemia. I wear this in honor of them. I can not get these...Build a Bear (they have a adult and child for sale for $2 for both) sells them and you can check caringbridge.org/va/cody
We are looking into getting bracelets for Ashleigh. Believe, Dream, Hope, Love...Ashleigh. We have not agreed on a color yet. I wanted lilac, but Howard wants something more gender neutral
Thank you Anne for asking.:)
Clinic went well today. Nothing exciting to report. We weaned Ashleigh's methadone, just a little because of the withdraw problem a few months ago. All of Ashleigh's labs are still stable. We are still watching her creatinine very close, due to increasing her FK506 (which had to be increased because of graft vs. host). We mostly talked with Dr. K about therapy for Ashleigh in the future. We are looking into the walking device (I mentioned a couple of days ago), aquatic therapy, and a therapy program in St. Louis. We also talked about getting Ashleigh a special bed, she is getting so big she is growing out of her crib. Due to seizures, voluntary and un-voluntary movements, Dr. K thinks we should look into a special bed for Ashleigh to protect her from falling or getting wedge in between railing and the mattress.
I hope you enjoy the new pictures. Please don't forget to leave a message in the guessbook. We may have to lock the website, so please sign in so I know who to send the password to. We are not sure if this will happen, we have just ran into a problem that may have to be addressed. Sorry, that is all I can say for now. If you email me, I can explain better.
Thank you for all your support and prayers. Please remember our sweet Angel friend Bree, who earned her wings early this morning. caringbridge.org/hi/breanna
Tuesday, January 18, 2005 8:33 AM CST
Early this morning, God opened his arms and recieved a very special angel. Our friend Bree earned her wings. Please pray for her and her family during this most difficult of times.
caringbridge.org/hi/breanna
Monday, January 17, 2005 10:08 PM CST
First...Please pray for a dear friend of ours. Breanna Arthurs has Krabbe disease and she is in need of alot of prayers! Please offer her the same support and love that you have always given to us. Thank you.
caringbridge.org/hi/breanna
Our friend, Joshua, also has Krabbe and was transplanted at birth, is having a hard time with infections, please say a prayer for this very tiny guy.
caringbridge.org/pa/joshua
Ashleigh had a lazy day today. She has been sleeping most of the day. Her teeth is still giving her a hard time. Ashleigh did do better in therapy today, not as much fussing. She even colored a picture in her stander today. Pictures will be posted soon, promise!
I have been talking with the dad of another Krabbe child. The dad built a walking device for his child. The child was affected like Ashleigh at the time of transplant and he is now walking with the assistance of this device. We are excited about it and as soon as we figure out where we are going to live and a therapy room for Ashleigh we will have one for Ashleigh. Our problem is the device is extremely large, so the therapy room will have to be larger than we planned for. We are still very excited...imagine, Ashleigh walking.
Someone asked me if I would have still had Ashleigh if I knew I was a carrier for Krabbe. I have been thinking about it for a while now and there is no way I could say no...Ashleigh is such a gift, I love her with all my heart and I could not imagine not having her. The father that I spoke with wrote a beautiful letter, it touched my heart so deep. Ashleigh is not a curse, I am not being punished with a child less than perfect. God trusted me with his most fragile and special gift. I feel the love that Ashleigh gives each time I touch her. I see the love that she feels when she kisses me or smiles. She knows us, knows love and knows happiness. Isn't that what life is about. Love and happiness. Once we decided to transplant, I have never regretted our choice. There are times I do wonder if I did it for me...mostly when Ashleigh is having alot of problems, but on her good days...I know, God and Ashleigh helped guide us to do this. God put an amazing woman on this earth, her purpose was to help children. How we thank God for Dr. K.
Please stop by the guessbook and let us know that you are checking in...we really enjoy reading your messages, especially on the harder days.:)
Also, please remember our friends in your prayers, especially Breanna and Joshua.
Sunday, January 16, 2005 10:08 AM CST
Ashleigh is having a better day...no crying or breathing issues! Her GvH is a little flared up but we are using protopic on it. She is starting to give her beautiful smiles and some giggles again. She is even moving her head, arms and mouth again. She just amazes me. A couple of bad days and then we are back to doing incredible things!
There are a couple of big things going on with Hunters Hope over the next few months and I just wanted to let you all know...
First, Hunter's Day of Hope for all children suffering from Krabbe and other leukodystrophies. Below is a letter from Hunter's Hope.
Light a Luminary in Honor or Memory of a Loved One!
Hunter’s Hope decided to try something new for the 2003 Hunter’s Day of Hope for Children celebration. Beginning in January, Hunter’s Hope collected a donation of $5 or more for a luminary in honor or memory of a loved one. Orders quickly came in and were accepted up until February 14th.
Each luminary had its personal message attached to it. The messages were also copied and displayed inside for all attendees to see. During the evenings festivities many paused with tears and smiles as they read the inspirational and moving messages. We received 561 luminary requests for a total of $7,737 in donations! We were also able to spell out Hunter’s Hope ‘03 with candle lights for everyone in the city to see!
We will once again be lighting luminaries at the 2005 festivites. Please read the below letter from Jim and Jill Kelly and mail your donation in today!
Dear Friends,
This coming year, on February 14th, we will once again be celebrating Hunter’s Day of Hope for Children in Orchard Park, NY. It is a true celebration of children - adhering to our mission of encouraging parents to love and appreciate their children more and thank God for such a gift of life.
Our goal for the luminaries is to raise funds for research, families, newborn screening and so much more. With your contribution, and contributions from your friends, family, and others, we will light the night up with Hope.
Please help us and be a part of our goal. With a donation of $5 or more, a luminary will be lit in memory or in honor of someone you love. All you have to do is fill out the slip below, tear it off, and send it along with your donation to the Hunter’s Hope office.
Please share this form with all of your family and friends. If you need more copies, you can print this form off our website at www.huntershope.org.
Thank you for choosing to light your heart, and ours, with hope. May God bless you!
With hope,
Jill and Jim Kelly
Founders Hunter’s Hope Foundation
--------------------------------------------------------------------------------
Print this page, cut/tear along above line and return to Hunter's Hope by February 13th, 2005
Please mail to: Hunter’s Hope Foundation, P.O. Box 643, Orchard Park, NY 14127
Your Name ___________________________________________________________
Address __________________________________________________________________________________
Please accept this donation of $___________ to the Hunter’s Hope Foundation.
I would like the luminary to read as follows:
If you are interested in lighting a luminary for Ashleigh or any other child or in honor of all our children...please just send me your message and donation and I can forward it to Hunters Hope or forward it to Hunters Hope. If you do send it to Hunter's Hope please also send me the message so I can read it. Hunter's Hope will recieve thousands of them and there is not a way to let each family know their messages...I will post them on Ashleigh's website for everyone to read. Thank you for your support, dedication to fighting childhood illnesses and donations.
Hunter's Hope Universal Newborn Screening Bracelets
To help raise money for our Universal Newborn Screening Campaign efforts, these UNBS Bracelets are available in quantities of 10 for a $10 donation to Hunter's Hope.
A shipping charge of $5 will be added to the entire bracelet order, regardless of quantity. Please call the Hunter's Hope office to learn more! 1-877-984-HOPE
Also, you can go to our Newborn Screening section to learn more about our UNBS efforts.
Get your Hunter's Hope NBS Bracelet Today!
I also have these braclets (similar to the yellow Lance Armstrong Cancer Awareness). If you are interested in them...please contact either Hunter's Hope or myself.
Hunter's Hope 2005 Collectable "Faith" Boyds Bear
Hello! My name is “Faith”. I am a personalized Boyds Bear created for the Hunter's Hope Foundation, an organization that seeks to increase public awareness about Krabbe disease and other Leukodystrophies and to raise funds for research to find a cure for these devastating childhood diseases. Hunter's Hope was established in 1997 by NFL Hall of Famer, and former Buffalo Bills Quarterback, Jim Kelly and his wife Jill, in honor of their son, Hunter James Kelly, who has Krabbe Leukodystrophy. “Now Faith is being sure of what we Hope for and certain of what we do not see.” (Hebrews 11:1) I am Faith, and I am a special addition to the Hunter’s Hope Bear Collection. It is my prayer that you too will believe in the Hope that children’s lives will be saved. Even though we cannot see a cure for Krabbe and other Leukodystrophies, we are certain there is one. Please take me home, and tell your friends about me, so that they can also have Faith. If you hold me close to your heart, you too can be sure of what you Hope for and certain of what you do not see.
To see a picture of Faith, log onto the huntershope.org
I have Faith and last year's bear "Hope and A. Future", if anyone is intrested in these bears please let me know or again, contact Hunter's Hope. They are beautiful!
We are also collecting tabs from soda/food cans. My neice's school is doing this and it is amazing how may they have collected. Think about having an organization you belong to joining in the collection. They can go to your local recycling plant and ask them to write the check to Hunters Hope Foundation.
If shopping on line register at igive.com, you can pick your favorite charity (hundreds are listed). Pick from the store you wish to shop and a percentage of your purchase will go to your charity. No extra cost to you! We split our charities between Hunter's Hope and Duke Pediatric Stem Cell Program (the only hospital in the country that would help us fight Krabbe).
All money raised by Hunter's Hope is used for Newborn Screening awareness, lobbying for better screening (which NY has just signed), family support, and grants for research! There is not a better way to honor our children then to join in on the fight!
Saturday, January 15, 2005 2:29 PM CST
Ashleigh has had couple of tough days. Yesterday, she was sneezing alot, then started retching (trying to vomit, but can't because of her nissen), she needed to be suctioned, needed oxygen for a while and cried a whole lot.
I called Sue (nurse practitioner)...she said I could bring her in but she didn't know what we could do. It was too late for a viral battery test (testing secretions for infections). I said we would stay home and wait to see what else happened. I didn't feel up to packing both kids up and taking them in, for really nothing. They couldn't do anything. Well, I am glad we did that...it all cleared up within a few hours and she was fine, all except the fussing. She has been doing crying and very demanding of attention.
When I was doing her mouth care (brushing her teeth and gums) I pulled out some blood. She was screaming so I took the opportunity to look. She has molars coming in on both sides of her mouth. Wow...I would be crying too! I massaged her gums with a Nuk brush and she seems to be doing better. Amagine that...Normal baby stuff!
Mackenzie and I have been busy...Last night Kelly and Cecelia came for dinner and a movie. Today we have been caring for Ashleigh, playing Guesswho?, card games like Go Fish and Old Maid. Now she is dancing to a show and I am holding Ashleigh and updating you all.
I wanted to tell you something about my puppy, Rajah. When we brought Mackenzie home, he would smell her but overall he didn't really bother with her much. Ashleigh was different. He was always smelling her, nudging her with his nose, licking her and if I moved her...he had to smell where she was laying and check her after I put her down. If she cried he checked on her. He knew! My boy knew my baby girl was sick and wanted to make sure she was okay. So, some of you may be saying..."she needs an institution about now" But there is more...
When I was a teacher...I brought Rajah to school "D is for Dog". Rajah stayed next to a little boy named Zak who has Cerebral Palsy.
Everytime Ashleigh had seizure problems, he would be obsessive over her for days before. We thought he was just being a brat for attention. Until...July, for a few days before Ashleigh became non responsive and was put on a vent in PICU, Rajah was terrible. Smelling, licking at her...driving us crazy. Thursday morning, Ashleigh was taking to the hospital, they thought she was going to die. Did Rajah warn us? He was amazing...I really miss my buddy.
Thursday, January 13, 2005 8:45 PM CST
Hi, All. Sorry for taking so long to update. It has been a tough week. Not with Ashleigh, she is doing wonderful.
Friday, Howard's sister took our dog, Rajah into her work because he was breathing hard and was dehydrated. His blood work looked okay on Friday. They kept him overnight and ran some more blood work and some x-rays. The x-rays revealed that his lungs and abdominal was full of fluid. They determined that was causing his breathing issues and he had cancer. Howard tried to get me home but our buddy couldn't wait, Saturday afternoon, my buddy, Rajah was put to sleep. I have not handled it well. He was our gift to each other for our wedding, he was a ten year old german shepherd. He would snuggle and loved to have alot of attention. In the same sense, I feel silly for being so upset, when I see the things I do. Children fighting, Ashleigh and her friends sick. Rajah was my baby, how very missed he is.
Okay, the week only gets better! Monday, Howard went to pick up a package at the apartment complex office and they tell us that they thought we were leaving on the 13th so they rented our apartment. So they moved us to another apartment. It is closer to Katie and it is a bigger apartment...but it is on the second floor and it was hectic packing everything. It will all work out, I am just very frustrated with the apartments and tired from moving.
Ashleigh is doing great. She did have a seizure on Sunday which made her sleep for a day and a half. Our visit with Dr. K went well. If Ashleigh has anymore seizures, we are increasing her Topamax. Dr. K thought her skin looked good, not perfect but good. We are going to keep her FK506 the same, actually we didn't wean any meds again. One day...
We have a couple appointments over the next couple of weeks and then we are hoping to head home. We will have to return at the end of February for IVIG, a neurological visit with Dr. K, and Ashleigh's 18 month studies.
Oh, on Saturday...Ashleigh was 500 days post transplant! Can you believe it?! It feels like yesterday. As many complications Ashleigh has from Krabbe and transplant we see such improvement in her skills everyday. Just small things that we didn't know would be possible. We are so bless!
Wednesday, January 5, 2005 8:44 PM CST
Sorry for updating twice in one day but I wanted to share a story about a very special little boy, a angel in heaven.
One day we were in clinic and a little boy came in, it was still warm out and he had on a pair of jeans, t-shirt and cowboy boots..."Cowboy's don't wear shorts". He talked about his horses and asked questions about Ashleigh. He was eating his arby's and candy. He was so sweet and kind. Now, he is an angel.
Please pray for Ryan Smedley and his family.
www.caringbridge.org/va/ryansmedley.com
Wednesday, January 5, 2005 4:07 PM CST
Tears roll down my face, a small step to saving childrens lives from this disease...
Below is the govenor of New York's state of the state address...
last October, we nearly tripled the number of diseases and disorders tested for under our nationally renowned Newborn Screening Program. This year, we'll add even more and make our program the most comprehensive no-cost newborn screening program in the nation.
One of these new tests will be for Krabbe Disease – a life-threatening condition affecting the nervous system.
In 1997, after their son, Hunter, was diagnosed with Krabbe, a family in Western New York created Hunter's Hope Foundation, which has since been a leading advocate for newborn screening expansion.
Hunter's dad is with us today. Whether throwing touchdowns for the Buffalo Bills or for this great cause, he's always been a New York hero and a true champion.
Jim Kelly, thank you – today's victory belongs to you.
Newborn screening can help ensure that children are given an opportunity to grow into healthy, vital adults. But let's not stop there.
If only every state and nation will follow their lead...Thank you to all of you in New York who fought for this...God Bless you and our wonderful children!
Tuesday, January 4, 2005 2:01 PM CST
Welcome to the roller coaster ride, please pay your ticket and get on board! That is how I feel right now. Last week, Dr. K was looking at a little girl who wouldn't stay awake or interact with us. She was thinking drug sedation or hydrocephalus. This week we have a wide eye little girl who is making noise after being talked to and completely responding to her surroundings! A completely different week then last! First thank you for all you support and prayers this pass week....and year!
Ashleigh has been wonderful. Awake, looking around and interacting. Howard was saying "Hi, Ashleigh", she would make a noise after he talked to her. So....this is very exciting...
Dr. K wants us to a double switch, if Ashleigh hits one it will say yes, if she hits the other she will say no. Dr. K said she wouldn't be able to do this today, but within the next few months she thinks Ashleigh may be able to answer yes or no questions with a switch. She has been very pleased with her mobility and her communications. Ashleigh has made may strides that they did not think was possible. Dr. K (and I) are also looking forward to our next visit with Dr. Escolar...I want to show off my sweet Ashleigh's new abilities! Dr. K wants an updated report.
Ashleigh does have a red and inflamed ear canel so we are pushing for that ENT appointment and started ear drops (antibiotic and steriod).
We also went up on her Topamax. Her level was actually low (they thought it was going to be high).
Told you this visit was much different. Exciting but in a much better way!
That was our visit, done by 2 pm! Enjoying this beautiful North Carolina weather.
Thank you and God Bless!
Saturday, January 1, 2005 9:57 AM CST
NEW PICTURES! Watch out...they are party animal!
Ashleigh seems to be doing a little better. She is still sleeping alot,but we do have moments of eye balls. We tried very hard to get a new smiling picture but she still is not giving them out.
I am beginning to think this is all disease related. Left over Krabbe damage. We will see after we get test results back.
Last night we made a big dinner, Mackenzie picked the menu (eggs, bacon, potatoes, toast and orange juice...for dinner). We decorated the apartment with streamers and confetti, we had hats and horns. We played games and around 10:30, Mackenzie lost her battle with the sand man. We tried to wake her for midnight, per her request. It didn't work. Ashleigh was sleeping too. Mackenzie woke this morning to tell us that we had the best party ever.
We have a busy day of football and food planned for today.
Howard at least is excited about it.
We are sending many wishes to you all for a happy and healthy new year, full of happiness, love and HOPE.
God Bless.
Friday, December 31, 2004 1:07 AM CST
Hopefully, this is all passing.
Ashleigh had a better day, she was awake some without whining. I know I don't have my medical degree yet, but...I think if it was hydrocephalus than it she would still be sleepy or she would be screaming.
Plus, I decided...you know me thinking too much...if Dr. K really thought that was a possiblity, I don't think she would let Ashleigh sit out here for a week having more damage done to her brain. So, I have convinced myself that it is medication related and we just have to adjust some meds....at least that is what I am thinking right now...so I don't make myself sick with worry. Back to Dr. K...we all know how aggressive she is with treating. So, again, she would have acted. Although we do have bad luck with Ashleigh miss behaving over holidays.
Ashleigh...she was awake some, not as much as she normally is, but we had some eyeballs and even some smiles. No giggles today...but slow and steady wins the race.
I am hoping we are getting back on track. I will let you know if there are any changes...
I have been talking with a family whose daughter was just diagnosed. I breaks my heart knowing the choices they face, I remember the place they are in like it was yesterday. Do we take our baby and poison her to try to save her from a beast of a disease. I am so thankful that we came here and even more thankful we have Dr. Kurtzberg. Please pray for this family as they travel this diffecult, winding and bumpy road, especially their baby girl.
Thank you for all the prayers for Ashleigh, they are working!
God Bless.
Wednesday, December 29, 2004 2:19 PM CST
I am not very good at "talking" or in this case writing right now...my mind is going a million miles a minute.
On a good note, Ashleigh is a little more awake today, she did have therapy. Although she did not interact much, not even to complain.
I recieved an email back from my email last night, instead of trying to explain it, I will just post the whole thing.
Sorry, I am just dazed right now. I wish I could say this is all fine, but for now...I am very scared.
Hi Michelle,
If she were metabolizing the meds differently, her levels could change and
that's why we continue to follow levels. If there were pressure on the
brain, you're right that would be most likely related to fluid. Some of
the kids can have changes early and some later on....more with seizures
than inc fluid. We did have another kid with a metabolic issue that
ended up with a shunt over a year post-transplant but that is less common.
Most of the kids exhibited symptoms earlier. There are two types of
hydrocephalus (fluid on brain) and one is more common in our kids with
metabolic disease. The CT would show if the ventricles were enlarged; if
they were, then we would do a LP to see what the pressure was and then talk
about the possibility of a shunt. Per what the neurology folks have told
us, the EEG predominately picks up seizures in certain parts of the brain,
but sometimes less in the central part of the brain. Sometimes there are
subclinical findings that may or may not be seizures and those are harder
to sort out both clinically and by EEG. As usual, the answers for
Ashleigh ( and other kids) are not always or often crystal clear. So we
just need to rule out things that could cause further damage to Ashleigh
and make sure that the changes are not something that we can treat and make
better. I didn't mean to be "less positive" yesterday; she's just
puzzling. I try to answer your questions honestly but the answers are
often difficult. I think we just need to look at Ashleigh systematically
and sort thru these newer findings....before we blame the disease process.
I just want "our little girl" who smiles and is making progress w/ her
therapy to return. I'm hoping this is just a bump in the road. Let's
see where things go. Is she any more awake today?
In all honesty, I don't think we at a panic point. Thinking of you.
Ashleigh slept all night, from the time we came home from clinic through to the morning. Not even waking for dirty diapers or feeds. Today, she is not "telling" me she is hungry or dirty but she is awake.
I will update if there is any changes.
Please continue to pray...
God Bless.
Tuesday, December 28, 2004 7:09 PM CST
I don't really know where to begin this entry, when things start to look good, they are suddenly crashing before your
eyes...
This morning, I took Makenzie over to Katie's and we headed to clinic. We got to clinic around 10:30, well...it was very, very busy. We were weighed in and sat in the "fish tank" room for 3 hours, waiting for a bed for Ashleigh to get her monthly dose of IVIG. Pam's dad went to get us lunch, thank you! It was great.
Finally, her iv is running and everything is going fine. Ashleigh gets a little fever, caused by the IVIG. Not a big deal...
Okay, the visit with Dr. K...She thought Ashleigh's skin looks much better and was not concerned with the Graft vs. Host. We are not making any medication changes with the steriods and FK506. Which I was hoping for, but it is okay...we will get Ashleigh off medications one day.
Dr. K did not like the amount Ashleigh is sleeping. She tried several times to wake her, only for her to go right back to sleep. We did some drug levels to see if her body is processing some of her meds. too slow causing her to have too high of doses in her blood, making her over sedated. That would be the best case.
If they come back okay, we are going to start looking, very aggressively for some other causes. Mainly, hydrocephalus! If the drug levels are okay, we are going to have a lumbar punture and a CAT scan of her brain. We will be looking for excess fluid on the brain or possible a mass. Both could cause alot of Ashleigh's issues with her breathing, heart rate, seizures, sleeping, and irribility. It is very common in Krabbe kids and alot of Ashleigh's friends have them. We thought this would be a bump we would miss. Hopefully, we still will. If it is hydrocephalus, we will have to take Ashleigh into surgery to have a shunt placed in her head to drain the fluid. Our concerns are if the brain is healing and making myelin will this cause farther damage? However, if she does have the fluid, it will kill her without the surgery. Also, if she does need the surgery, we will be at Duke for a very long time.
I guess we can think of this as the best and worse case...we are not sure of any of this. We will have to wait for test to come back and see where to go next.
I didn't expect to hear of this today and I certainly wasn't thinking clearly when I heard it all so I did not think to ask a bunch of questions. I emailed Dr. K with a list of about 15 questions, I will let you know about them when I have answers.
I also talked with Dr. K about the celebrex again. I am very uncomfortable with the news that is on about it. So, she contacted some people and got me numbers that made me feel better...They did a study out of a couple hundred people that were taking the drug, 40 had increase heart problems after being on it for 2 years. The reason it is being flagged is because that is 5 more than what they expected. It does sound better that way. Since Merck pulled Vioxx, they felt they had to release the report. There are a couple other drugs, in the same family, that are also having conflicting reports being released. She said that Vioxx will be back on the market and when it is we will switch back to it.
On a lighter note, Mackenzie and Katie went to the movies today. Katie's grandparents took them to see The Incredibles. I haven't talked to her yet, but Pam said they haven't stopped talking about it. They are so good for each other. Ashleigh is sleeping and Mackenzie isn't home yet, so I am going to get some housework done while it is quiet.
Please say some extra prayers for Ashleigh and all the children around the world that are fighting for their lives.
God Bless.
Monday, December 27, 2004 7:56 PM CST
I wish I could say things were getting better but they just are not. Ashleigh had a good morning, happy, alert and even a few smiles. By mid afternoon, she was sleeping. Tonight she is either screaming or sleeping. I have had to suction her a few times and I have the oxygen ready just in case. I will also set up with the Kristoff's to take Mackenzie if I have to take Ashleigh in to the hospital tonight.
We had to put her back on the celebrex (she was off for a few days) until Dr. K finds something else to help with the inflamation in the brain. The concern is that the celebrex will be pulled soon and we will not have anything available. According to NIH and the Myelin Project, drugs like Celebrex and Vioxx help with the brain's ability to heal, and make new myelin. So, I will keep Ashleigh on it for now. I guess until the celebrex is pulled from the market. I liked the Vioxx better, because it was made into a liquid and was FDA approved for children. Celebrex, we have a capsule that we have to open and split the powder ourselves, guessing that we have it split evenly. Celebrex maker said they had no interest in making it into childrens form.
We are going to try to plan our trip to St. Louis to see Dr. McDonald in the spring. After our 18 month check up here at Duke. We will have new films and reports to take with us and have a better idea of Ashleigh's nerve conduction and MRI. Dr. Escolar is going to contact them for us and set up everything. I am waiting to hear from another Krabbe mom who took their child there to see what they thought. I am very excited to be referred there and get Ashleigh in more therapy programs. Dr. Escolar also wants us to have Ashleigh in the pool for aquatic therapy 2-3 times a week.
I am looking forward to the new year and the HOPE that it has to offer Ashleigh. The farther away from transplant and the closer to the possiblities it has to offer.
God Bless.
Sunday, December 26, 2004 8:59 PM CST
UPDATE 11:14PM EST
I just heard back from Dr. K, she thinks the screams may have been seizure related and Ashleigh is sleeping so much because of the episode. If she is still sleepy by Tuesday Ashleigh is going to have an EEG. Hopefully, this passes and it is not seizure related. Please pray for our sweet Ashleigh.
Sorry for the last post, the computer was down and Christmas and Ashleigh have kept us very busy.
I will just start where I left off last week...
Thursday, Ashleigh let out three odd screams. I was holding her and they were short but very high pitch. Since then, she has been sleeping or crying. We are not sure what they were or why the change in her behavior. We are watching her pulse ox and blood pressure (the excess sleepy was one of the problems when she ended up on the vent in July). So far, they have been fine. She has not required any oxygen or suctioning in a few days.
Christmas eve we had a nice dinner and relaxed, read some Christmas books and snuggled into bed early...
Christmas morning was wonderful. I was in the kitchen and I hear Mackenzie yell..."Mommy, Santa did come". Her excitment was so great. We sat around the tree and opened presents. Mackenzie took turns opening Ashleigh and her presents...taking the time to show Ashleigh each gift. Howard will post pictures when he gets back...I will try but I can't promise. We went to the Kristoffs for dinner along with Jackson's family. We had a great time, exchanging presents, eating and enjoying the company. We stayed much later than we expected (Pam and I are talkers...but then we added D'Anne...Wow!). Howard, Bill and Marshall enjoyed the football and food. Mackenzie and Katie played with their new toys and our Krabbe babies hung out (Ashleigh slept the entire day). Thank you for the wonderful packages and gifts that we received in the mail. Thank you for all the kindness that you have given us during the holiday season and throughout the year.
Today, Mackenzie and I played Trouble, Guess Who, Twister (my body can not do that game anymore), barbies, babies and polly pockets! Ashleigh slept. Everytime I would wake her, she would go right back to sleep. I have emailed Dr. K to see what she thinks. I haven't checked to see if she responded yet.
We have the day off tomorrow, depending on what Dr. K says, we may have to do some blood work. Jamie (PT) is off.
Tuesday, we have clinic. Ashleigh is scheduled for her monthly dose of IVIG and we will see Dr. K and Sue. We have not seen them in two weeks (neither has any of any of their other patients) so clinic will be very, very long. I am setting a goal to be there by 10 am and hopefully home by 7 pm.
We hope that you all had a holiday full of love, joy and HOPE. We are wishing you all health and happiness in the new year. God Bless.
Wednesday, December 22, 2004 8:38 PM CST
Ashleigh has been doing well. She gave Jamie (PT) a hard time and had a seizure during her therapy session. She then calmed down and had a wonderful stretch. Ashleigh has been full of smiles and giggles. We have had a couple of great days together. Not much exciting to report. I ordered some prescriptions, I'll pick them up tomorrow when I deliver cookies. Cookies...I have baked cookies all day! Ashleigh, Mackenzie and Katie were great helpers. We have Chocolate Chip, Snickerdoodle, sugar cut outs, Cherry Garcia, peanut butter and jelly...along with chocolate covered pretzels and walnut clusters! Yes, we have been busy. We are delivering them to 5200, clinic and Dr. K's office staff...From us, the White and Kristoff Families.
Please say a prayer for little Alyssa Kristoff, she hit a bump in the road.
We also got a package in the mail today from baby Madison's family. Check out her site...I don't know if they can come any cuter! Many, many thanks go out to her mommy, Wendy and daddy, Chad.
It has been a busy week, yet a wonderful kind of busy. Things feel normal.
I have been "reflecting" on this pass year...but that will be next week's update.
Well, anyway...Wishing you all a very, very happy holiday season...whatever holiday you will be celebrating this year, may it be a healthy one.
Please remember all of the children who will be celebrating Christmas in the hospital and all of the families who will not have their angel babies with them this year. God Bless.
Oh...Mackenzie is going to be in dance recital in June!! How exciting...she has not had one class, but hey...she'll be wonderful!
Friday, December 17, 2004 10:25 PM CST
Ashleigh had a pretty good day. She wasn't smiling but she wasn't having seizures or crying. She had PT this afternoon, Ash let Jamie have a little attitude when she tried to put her on her elbows.
I haven't given you an update on our schedule in a while so I thought I would do that tonight.
Ashleigh is getting PT 3 times a week, we are still working on getting feeding therapy. She goes to clinic on Tuesday's AND sometimes Fridays. At times we have to use breathing treatments with two medications 3 times a day. That is not all the time and at home (New Jersey) Ashleigh has alot more therapy. Once we get home and back on schedule, I will update this again.
Her schedule also includes, suctioning, monitoring her oxygen and heart rate, bathing, mouth care, feeds by mouth (when she is healthy enough), lotions (protopic), snuggling, playing and reading...
8 am
5 oz of formula via g-tube
Ativan .2ml
Baclofen 1/4 tab
Calcium 5 ml
Celebrex 1/2 cap
hydrocortisone 3 ml
prilosec 3 ml
Zonegran 1 cap
noon
5 oz of formula via g-tube
Topamax 2 tablets
FK506 .7ml
methadone .1ml
Bicitra 10ml
2 pm
hydrocortisone 3ml
4pm
5oz of formula via g-tube
Ativan .2ml
Poly-vitamin 1ml
vitamin D .1ml
8pm
5 oz of formula via g-tube
Calcium 5ml
hydrocortisone 3ml
methadone .1ml
prilosec 3ml
Zonegran 1 cap
baclofen 1/4 tab
midnight
5oz of formula via g-tube
Ativan .5ml
Bicitra 10ml
FK506 .7ml
Topamax 2 tabs.
As you can tell we have not been able to wean many medications, we are hoping to wean the Methadone, FK506 and hydrocortisone down soon. Last week, the doctor we had also mentioned taking the baclofen away. Using botox as needed. Dr. Kurtzberg would have to approve it and I don't think that would happen until we wean some to the others first.
Some of you may be questioning the Celebrex. We have talked with Dr. Kurtzberg about it several times. She said that we would still use Vioxx if it was available. That we are seeing 10,000 people having increased heart problems compared to the millions that take the drug. Several top researchers feel that it important for children like Ashleigh to take a medication to help with the inflamation in the brain. It helps with the amount of brain damage, the irrability and seizures. Ashleigh is not able to take Motrin because of transplant.
So, that is our day. It is busy but not bad.
Well, have a good night/day.
God Bless.
Thursday, December 16, 2004 9:26 PM CST
Last night, around 11:30, Ashleigh had a seizure. It lasted about 40 seconds. At the time, Ashleigh was laying on my chest. I felt her jolt a bit, cry, then it started. Her arms stiff, legs and arms shaking, holding her breath. Afterwards, her heart rate was unstable, dropping low then bringing it back up, only for it to drop again. I watched her most of the night, she slept well. Today Ashleigh has been very demanding, wanting to be touched and comforted.
Everything else has been good today, just some extra TLC.
Thank you for your prayers. Please pray for the children here at Duke, and around the world that who fight for life and for those who have joined our Lord in heaven.
Merry Christmas!
Tuesday, December 14, 2004 10:00 PM CST
We have a Christmas tree!
Howard and Mackenzie went out today a picked out a great tree, as they always do. Howard put the lights on and tomorrow we will finish decorating it. It is beginning to feel like Christmas!
Ashleigh and I went to clinic. Sue and Dr. K are working in patient so we saw Gil and Dr Szabolcs. Not much happened, refilled some scripts, checked her chest, she gained some weight,cleaned out her ears. Dr Szabolcs tried to clean out her ears, it didn't work so again, we wait for ENT to have an opening. Dr Szabolcs said we only have to come in if we are having a problem. Well, Ashleigh must of heard him, she is having a little bit of a hard time. Fussy and a little junky, we had to suction her. Her oxygen and heart rate has been good.
Merry Christmas.
Monday, December 13, 2004 9:57 AM CST
Ashleigh had a pretty good weekend. She had a couple of difficult moments, but overall it was good.
After many emails and phone conversations with Sue and Dr. K, we have decided to stay put. We will be having Christmas in Durham, North Carolina again.
"In light of Ashleigh's recent episodes, I think it would be best to stay"...the email from Dr. K.
We just want to make sure we are not missing something. These breathing issues are very commond it Krabbe kids, however, Ashleigh has never had them for no reason...there is always an infection or seizure or something that causes her to have them. We just want to be sure we are not missing something.
Howard is bring down some decorations and he and Mackenzie are going to get a tree. We will be fine, the four of us will be together.
We are still waiting for the ENT appointment, to clean out her ears. Hopefully we can do it soon, in case there is an infection hiding in there.
Last night, Kelly (David's mommy and Hunters Hope family support here at Duke), Pam and Katie, D'Anne (Jackson's mommy) and Jhyrve', Karen (mom) and Luke (brother) came over for dinner and a get together for Jhyrve' to go home tomorrow. The wonderful news is they were picked for a Extreme Makeover: Home Addition. They are tore their house down and are building them a home that will be completely built to assist Jhyrve'. For those of you who don't know her, she is a beautiful (inside and out) 16 year old girl who was diagnosed with a rare form of Krabbe. She also had a cousin, Haley, who died from Krabbe as a baby. I will give you more information about the show when it airs.
Have a great day!
caringbridge.org/ca/jhryve
Monday, December 13, 2004 9:57 AM CST
Ashleigh had a pretty good weekend. She had a couple of difficult moments, but overall it was good.
After many emails and phone conversations with Sue and Dr. K, we have decided to stay put. We will be having Christmas in Durham, North Carolina again.
"In light of Ashleigh's recent episodes, I think it would be best to stay"...the email from Dr. K.
We just want to make sure we are not missing something. These breathing issues are very commond it Krabbe kids, however, Ashleigh has never had them for no reason...there is always an infection or seizure or something that causes her to have them. We just want to be sure we are not missing something.
Howard is bring down some decorations and he and Mackenzie are going to get a tree. We will be fine, the four of us will be together.
We are still waiting for the ENT appointment, to clean out her ears. Hopefully we can do it soon, in case there is an infection hiding in there.
Last night, Kelly (David's mommy and Hunters Hope family support here at Duke), Pam and Katie, D'Anne (Jackson's mommy) and Jhyrve', Karen (mom) and Luke (brother) came over for dinner and a get together for Jhyrve' to go home tomorrow. The wonderful news is they were picked for a Extreme Makeover: Home Addition. They are tore their house down and are building them a home that will be completely built to assist Jhyrve'. For those of you who don't know her, she is a beautiful (inside and out) 16 year old girl who was diagnosed with a rare form of Krabbe. She also had a cousin, Haley, who died from Krabbe as a baby. I will give you more information about the show when it airs.
Have a great day!
caringbridge.org/ca/jhryve
Friday, December 10, 2004 6:06 PM CST
We had a huge storm last night. Alot of thunder and the rain pounding the windows. It was a long night...
Ashleigh had PT this morning, she was not very nice to Jamie. Fussing and fighting therapy. It was not her best session.
We then went to clinic...Ashleigh had another breathing episode. Suctioning and x-rays were done. The x-rays did show a small spot on the tip of her lung, we are treating it as an infection, so antibiotics were started. Dr. Pasad also wants some other testing, including a CT scan of her sinuses. Ashleigh heart rate was 166. I was concerned that she was developing fluid around her heart or an enlarged heart (common side effects from transplant), but Sue feels that her heart is working very hard to keep her oxygen higher so that is why she is having the high rates. Children with enlarged hearts and fluid have other symptoms that Ashleigh does not, plus her x-ray would have given some indication of heart trouble. Anyway, Sue is going to talk with Dr. K about what testing to do, what other treatment and if we can go home. HOME...at this point I just want Ashleigh to be healthy and Mackenzie to be happy. I want to decorate for Christmas, for Kenz, wheather it is here at the apartment or in New Jersey in our house.
Thank you for all your well wishes, prayers, guessbook entries and emails. Your support has carried us so far. A million thank you's go to each of you....God Bless.
Thursday, December 9, 2004 8:56 PM CST
Sorry it has taken so long for an update.
We went home for a few days, it was nice to be in our house but very busy! Howard and I celebrated out 10th wedding anniversary on Friday, Saturday we had a military Christmas party, Sunday I went to the movies with Mackenzie and Nicole (neice) to see the Polar Express.
We returned to North Carolina on Monday so we could see Dr. K and Sue on Tuesday at clinic.
Clinic was very busy and very backed up, so they drew Ashleigh's blood and said we could go back to the apartment...they would call when we could be seen. Well, those of you who know me...I started talking to Pam and Karen (Krabbe, transplant moms). Ashleigh fell asleep in my arms and was very happy, so why move?! Around 6 pm, Ashleigh woke up and was crying alot. I could calm her down, when she did stop...it started back up within minutes. I asked the nurse for a pulse ox because she seemed to be breathing a hard. When we hooked her up she was only at 82 % oxygen and her heart rate was 164. The nurse went to get some suction and oxygen supplies and told Sue that Ashleigh was in trouble. Sue (who was helping Dr. K draw blood) came in and deep suctioned Ashleigh, listened to her chest, positioned her and suctioned more. After about 30 to 40 minutes, Ashleigh was doing able to keep her oxygen up better. For the next 3 hours the monitored her, she continued to have some breathing issues, but was able to bring it back up on her own. Dr. K came in, her chest was clear. If she continued to do it through the night, we could do a chest x-ray. Most likely we will not know what is causing it. Since we have oxygen, suction and pulse ox, we took her back to the apartment to monitor her.
She has been very fussy, not sleeping well. We don't want to give her extra Ativan for fear it will lower her ability to breath, make her too sleepy.
We are going to start looking for some pain possiblities, she is teething and her ears are full of wax so there could be an infection that we can't see or even more compression fractures. I will let you know, as we know. However, we may not know the cause...Dr. K did say it did not appear to be seizures.
Sorry, so short...Ashleigh is crying and I am very, very tired.
God Bless.
Tuesday, November 30, 2004 10:17 PM CST
So maybe I should have holded off on packing the apartment...
We are going to have a short trip home for the weekend. We have a military holiday party and I have a doctor appointment for me, then we are heading south again.
Only for a week we will have Christmas in New Jersey. Ashleigh has large amounts of wax in her ears, so much that they can't see her ear drums. Everytime we touch her ears she pulls away and starts to fuss, we want to make sure there isn't something ugly growing in there. Also, since we increased her FK506 last week, we want to do some blood draws to make sure her creatinine stays down (creatinine is the kidney functions...Ashleigh has had trouble with this in the past because of Acyclovir and FK506). If it stays down, we will only do blood draws once a month when we return to Duke). She has a bump on the back of her leg we want to have checked out and her glands in her neck are a little large. Also, her Graft vs. Host disease...her hair and toe nails are falling out.
None of this is serious, we just want to get it all taken care of to avoid it does get out of control.
Sorry, for the dry entry...long clinic day.
Good-night.
Please continue to send the extra prayers to our friends, Maddie, Corey and Jackson. Thank you.
Tuesday, November 30, 2004 4:06 AM CST
Ashleigh had a very sleepy day. She woke for therapy, fell asleep during her session and slept most of the day. She was awake tonight with her beautiful smile and a few giggles.
I e-mailed Dr.Kurtzberg about it along with a few other questions. A half hour later I recieved a e-mail back saying we can go home. We will see Dr.K at clinic, get some infusions and test blood...then we are free to go with the agreement that we return every four weeks for a 2 day visit. I have been packing all day...
I know I have asked you all to pray for some of our friends in the past but please, please keep sweet Jackson in your prayers.
jacksonwhite.com
Monday, November 29, 2004 10:17 AM CST
Ashleigh is doing well. She needed to be suctioned a little on Saturday and was a bit fussy. She had a great day yesterday. This morning she cried for a hour and a half. She is tolerating her feeds, enjoying her therapy and seems to feel well. Ashleigh has been smiling and laughing a lot more.
Ashleigh gets her monthly dose of IVIG at clinic in the morning and we see Sue and Dr. Kurtzberg. We are going to push to home. I think it is time. I even started packing the apartment. Ashleigh is doing better and Mackenzie is having a hard time. Life needs to move on for her. When we go home she can start school and dance, get out and enjoy her friends. She already has 3 playdates planned for when we are home...going to the movies, build a bear (again), and Libby Lou (making her own lotions and bath soaps). The past week has been hard on her and I just want to make things easier on her. I may get Ashleigh a sitter today and take Mackenzie out for a while, I offered the movies or something...she just cried and said no.
We are going to decorate for Christmas and enjoy the holiday season.
We are putting our house up for sale. It is just not partical for Ashleigh. It is two story, 120 years old, one bathroom and no room for therapy.
We are going to start looking for a ranch home with an open floor plan for Ashleigh's wheelchair, an extra bathroom for it to be handicap accessible and an extra room for therapy. Somewhere in South Jersey, Delaware, or Pennsylvania. Delaware and Pennsylvania have better benefits for handicap children so they would be ideal. We also have talked about moving to North Carolina, Howard would have to find a job and transfer National Guard units. Right now, we are just looking at our options. Everything happens for a reason, so if we are met to move God will let us know. I also feel, I could do more to spread awareness in North Carolina (helping Kelly Brown, Davids mommy and Hunters Hope employee), New Jersey feels like a dead end.
Please keep Cory and Maddie in your prayers, they are both going through a hard time and could use some extra prayers.
Thank you for all your support and prayers that you have given to Ashleigh and all of our very special friends.
corylewis.blotspot.com
caringbridge.org/mi/trimpermld
Thursday, November 25, 2004 10:05 PM CST
Howard, Mackenzie, Ashleigh and I, spent today together. We watched the Macy's Day Parade, watched football, cooked and of course, ate...way too much. Howard and Mackenzie fought over the tv a few times...Mackenzie wanted to dance to a video and Howard, well...you know, FOOTBALL.
After dinner, we walked over to the Kristoffs and enjoyed some apple pie, looked at the shopping ads and more football. It was a nice walk, a little chilly but it helped bring in the christmas season. The cold air and the smell of the fireplaces...perfect.
Ashleigh is doing well. She has been having a "fussy time" every night. Her heart rate has been high at night, her oxygen is normal, dropping when she is in a sound sleep. One night we did have a little oxygen on her and had to suction her a few times. Her lungs have been clear. Her graft vs. host disease is looking better, her skin is dry and peeling in a few places. We will meet with Dr. K on Tuesday, we should have more news after that.
I thought I would share something with you, as we all enjoy our family, remember those who are saying good-bye to theirs. Last night, Howard and I talked to our good friend, Dennis. He is also Mackenzie's godfather. Tonight, Dennis spent Thanksgiving with his wife, son, daughter and other memebers of his family. Tonight at nine o'clock he reported to duty, tonight is the last night he will be with his family for over a year. He is one of our hundred of thousands of soldiers who are fighting in various "hot spots" throughout the world. Please keep Dennis in your prayers along with all of our military. Tonight we are so very thankful to those who have served and for those who serving. God Bless.
Tuesday, November 23, 2004 11:02 PM CST
Clinic went well today. Dr. K was out of town, so we just had Sue today. "Just"...Sue is wonderful
We are stopping the breathing treatment, we will only use them PRN (as needed). Sue thought that Ashleigh sounded much better and her "cold" is gone.
We also went up on her FK506, her skin is very broken out today with Graft vs. Host Disease. It mainly shows up now as dry, red skin.
That is it, the only changes we made this week.
We also talked more about the EEG. The spikes is seizure activity. They are just under control because of the medications. Mostly, the Zonegran. Some of the breath holding is just two year old stuff, not all of it but some. Two year olds have temper tantrums, and Ashleigh just wants to be like every other child her age! We mainly need to watch for shaking and jerking. The other thing we were concerned about was the unstable heart rate and oxygen saturations...most likely that is all related to Krabbe. We have to treat it as it comes, but we have no way of knowing when it will occur. We will be giving her oxygen and taking her blood pressure and other vitals when it does occur.
Mackenzie played with Katie all day...when I was taking her to Katie's, two buildings down from our building...I let Mackenzie sit with up front. I told Mackenzie that it was nice having her upfront next me, I can't wait until she can sit up front with me all the time. Her response was that she can't wait until she is big so she can have a baby in her belly! I was a little shocked by her response so she reminded me that I once had a baby in my belly too!
Lord, Please help me!
Thank you for your wonderful support. Howard, Mackenzie, Ashleigh and I will be spending the day together. Eating, watching football and playing games, what a great family day, how lucky are we!
Sunday, November 21, 2004 11:13 PM CST
Ashleigh seems to be feeling better. I had to suction her for the first time in two days, at about 8:00 tonight. She has been a little fussy, demanding alot of attention. We played with some of her new toys today and snuggled a whole lot.
Mr. Bill took Mackenzie and Katie to the park. They got so dirty they had to get a bath! Sounds like they had a blast!!
I thought I would share something I read with you, November is National Bone Marrow Month. Howard and I feel that since OUR daughter had a stem cell transplant it is our responsiblity to Ashleigh to stay update on these things...supporting bone marrow and stem cell donation, along with following the course of stem cell research. Anyway, this would be a great time to sign up to be a bone marrow donor. You do not have to donate unless, you are a match for someone. Now, you will just answer some questions and have some blood taken for a type and screen. It is very easy and in the long run, it could save a life.
There are alot of very sick kids here right now, kids who could really use some extra prayers. Please say a prayer for the children of 5200, caringbridge, Krabbe, MLD, and all childhood illness. Thank you so much for your continued support and prayers for Ashleigh.
Good-night.
Saturday, November 20, 2004 4:17 PM CST
Dr. Kurtzberg thinks we should hold off on making any medication changes for her seizure. The EEG did show extra electrical energy, alot of spikes and a pattern of epilepsy. However, because there was not any "dangerous" seizure activity, it is more important to have Ashleigh awake and alert. If she develops tonic-clonic movements, we will have to re-think this plan. We will not see Dr. K this week, for she is enjoying her family this week. We will see her the following week and then hopefully we will have a plan for better caring for Ashleigh and returning home.
Emotionally, we need to get out of here. Death is everywhere. Someone told me the other day that they don't like to call me because I am always telling them about children dieing. That is want we are surrounded by, death. Not only here at Duke, but our friends that we have made through Krabbe and caringbridge. Our children are fighting for their lives, the lives that so many take for granted. I am not consumed with what to wear or how I look. I am focused on death. Maybe it is not the best way to live, but it is what I see, hear and feel on a almost daily basis. I am burned out, yet so drawn to it. I look at the children and I see hope, a hope for better days. Hope for a cure. I hold Ashleigh every night begging her to continue her fight. I once asked Dr. Kurtzberg if there was ever a time that we could say Ashleigh is safe, she will not die. Her response was that it depends on my religous belief. My belief is that God will take Ashleigh when He feels it is her time. Nothing I do on earth will stop Him from calling her home to heaven.
Another sweet child lost his battle with his disease. Timothy earned his wings in the early morning hours, while being loved by his mommy and daddy. Please pray for him, along with all the children battling disease in this world.
There are so many very sick children here, they all need our prayers. Please, stop reading and pray. Pray for better days for all of them.
As bad as I feel things are with Ashleigh at times, there is always someone with a harder day, worse diagnoses.
I will update soon...
caringbridge.org/co/timothy
Saturday, November 20, 2004 0:09 AM CST
I just heard from Sue, Ashleigh's EEG showed...
"intermittent spikes that were epileptiform in nature" but the good news is "are not the bigger kind that cause damage to her brain."
I have sent Sue some questions, I will update more when I get some answers as to what we do now.
I took Mackenzie and Katie to Build a Bear yesterday, they had a great time. I will post pictures soon.
Thursday, November 18, 2004 11:13 PM CST
First, I recieved this book today and I thought I would start sharing some of it with you...they are just short saying and quotes.
"Hand in hand we will grow into the promise of tomorrow, taking with us the enchantment of this day."
I know I haven't updated much, this just has not been a good week for Ashleigh.
On Wednesday, we had a EEG put on her. It was to stay on for 24 hours. Howard took her today to have it removed, Dr. K extended the orders and she now has it on for another 24 hours.
Ashleigh had alot of issues today, the good news is that they are all recorded on the EEG. Her heart started racing this morning, her O2 levels then started to drop. She was on oxygen on and off all day. She also was very sleepy and was hard to wake at times. Later this afternoon, she had a seizure. It just wasn't a good day, I don't know how else to tell you about it.
Hopefully, we will be able to sort all of this out soon.
Ashleigh's birthday was nice. It is just hard to believe she is two years old. It was hard to think that it was a day that we were told we wouldn't have. How lucky are we to have our baby girl with us on her special day...
Mackenzie's birthday was today, she is five. I just realized she would be going to school next year. I can't imagine putting her on a school bus. How big she has grown?. She is such a good girl...so wonderful to her sister. She will be more compassionate and loving because of the gift that Ashleigh has given her. Today did not go as planned, because of all of Ashleigh's issues we decided not to go to Build a Bear. We are planning on getting there soon. Mackenzie and Katie are looking forward to it.
Last night a few of our Krabbe and transplant families came over to celebrate Mackenzie and Ashleigh's birthdays, along with Ashleigh's physical therapist, Howard's mom, grandmom and sister. It was a nice time, talking and eating. It is wonderful to see so much hope in one room. We played pin the tail on the donkey, yes, even some of the adults. Mackenzie and Katie won!
I will update more as we get results in from Ashleigh's test. I am sorry for being so short, I am just drained...
Thank you for all your birthday wishes, emails, cards and packages.
Tuesday, November 16, 2004 2:25 PM CST
Ashleigh's birthday was celebrated with cake, presents and lots of love. Thank you to all of you who sent message of celebration, love and hope.
Pictures will follow soon...
Ashleigh did have a tough day yesterday, she had four seizures last night, so we emailed Dr. K. She had us give her extra Ativan. Today we went to clinic and as soon as we got there Ashleigh started having some breathing issues. We went for a chest x-ray that came out normal...her lungs are clear. Dr. Kurtzberg came in shortly after we got back from radiology. She watched Ashleigh and thought that she has a simple cold. We gave her IV antibiotic and steriods (we will repeat them again tomorrow). We are also going to go have a 24 hour EEG put on tomorrow also. We are hoping to capture some of the seizures so we can figure out where they are coming from in the brain. We also added another breathing treatment/medication, oral antibiotic and a cold medication. We are going to use a cool mist vaporizer, nose drops, and ear drops.
I will update you after we here the results of the EEG...
Monday, November 15, 2004 7:13 AM CST
Happy 2nd Birthday, Ashleigh Ryann!!
Mommy, Daddy and Kenz love you so very much...
Wednesday, November 10, 2004 10:08 PM CST
Clinic was very long yesterday. We arrived late, because we were being lazy. When we did get there, clinic was so backed up that we just did Ashleigh's blood draw and left for a few hours.
We later went back to see Sue and Dr. Kurtzberg.
Ashleigh's labs look great. Dr. K does want her to have an EEG before we go back to New Jersey. The problem is that EEG is very back up and we may not have an appointment for weeks. Sue is doing her best trying to get us in there.
I asked Dr.K about a treatment that some other Krabbe families have been talking about - glyconutrition, which is suppose to promote cell to cell communications. She said she never heard of it but if we got her the information she would investigate it for us. We decided not to look into, if Dr. K is not know about it, I am not comfortable with putting Ashleigh through it. We will wait to see when the studies come out about it. So far, there is no printed data on it being used on leukodystrophies.
We did not make any med. changes this week. Dr. K was pleased with the way Ashleigh's skin is clearing up, but still wants to leave her FK506 where it is for now. We will change it in a week or two.
Ashleigh is still on breathing treatments and she is still requiring suction.
Today, a few Krabbe moms' came over for an afternoon of snacks, hair and pedicures. It was great seeing everyone and talking about our kids.
We are thinking about something to do for Ashleigh's birthday, we are thinking about the zoo, but we have to see what the weather is, it has been very chilly down here the past few days. Mackenzie wants to take Katie to Build a Bear for her birthday. Five more days and my baby will be 2, I guess Ashleigh really is getting to be such a big girl. My big girl, Mackenzie, will be 5. It feels like yesterday...
Sunday, November 7, 2004 12:39 AM CST
The picture above is Ashleigh smiling...
Ashleigh had a couple of wonderful days. Laughing, smiling and interacting with us. Just a simple "hi" to her has her lite up with a beautiful smile. It is amazing that something so simple can bring so much joy. Thank you to all of you for your wonderful entries in the guessbook, e-mails and on the krabbe message board. Your support has carried us...
Ashleigh did have a very big seizure early this morning. It lasted for about 3 minutes and I had to give her a high dose of Ativan to help stop it. Needless to say, she has slept all morning to recover from it. Her oxygen, heart rate and blood pressure have all been good. She usually has a problem with them after large seizures. I am also waking her every so often to make sure she is okay.
I e-mailed Dr.Kurtzberg to let her know. Ashleigh's topamax level came back at 7 (it should be above 12). Three weeks ago, it came back at 7.7, we increase her dose but for some reason it is still too low. I am sure we will have to increase it again. I am also sure Dr.K is going to keep us hear until her level is okay and she is not having seizures.
Ashleigh is having ALOT of thick secreations. When I emailed Dr. K, I also asked to stop the Robinul. The purpose of the Robinul is to help dry up secreations, however it makes Ashleigh's secreations too thick and stringy, making them too hard for her too handle. I have been suctioning her to help.
When Howard gets here, he is taking Mackenzie to the movies and I am taking her to pick out her birthday party supplies. She is very excited. She is also making plans to go to the movies with her Aunt Nicole and her friend Kelsey. Kelsey's dad is Mackenzie's godfather, he is leaving this month for Iraq. Please keep "Uncle Dennis" in your prayers, along with all of our troops. During the holidays, also remember the sacrifice they are making for us, our freedom and our belief. God Bless.
Update from earlier...I got an e-mail from Dr. Kurtzberg. We increased the topamax and stopped the robinul. Ashleigh had another seizure this afternoon, this one lasted 40-50 seconds. We are also going to continue giving the extra Ativan when she has the longer seizures. Dr. K said we will re-evaluate on Tuesday but to bring her in if we need to. I will update if anything changes...Good night.
Tuesday, November 2, 2004 1:47 pm CST
The above picture is of Ashleigh's smile. It isn't a good picture, I was moving when I took it. More too come...
Tuesday, Dr. K visit...
First some good news, Ashleigh was all smiles for Dr. K and Sue today. However, as soon as Dr. K took out her camera, she stopped.
We increased her FK506, Robinul and we are keeping methadone. So the visit didn't go as we thought, but soon. We can't rush these weans, it just wouldn't be safe for Ashleigh. We talked about going home, not a date. Just a plan. Since we won't have a neurologist, the plan will be to return to Duke once a month to see Dr. K. We will also get checked once a month by Dr. Renwick at duPont. We are working on a good therapy plan, we are going to push Ashleigh hard, but still cut some appointments out. So far, we are going to have the following...Aquatic (once a week, try for two), Feeding (once a week), Speach (once a week), Physical (twice a week), developmental (once a week, but for 2 hours), and visual (once a month). That was about it...in and out in 3 hours.
Last Week...
Sorry it has taken to long for an update.
Thursday my sister and neice came for a visit. We went to clinic for some halloween fun. The university student had some tables set up for the children with games and crafts.
Ashleigh slept great and we had no issues to worry about.
Yeah!
Friday we went back to clinic, this time with costumes on! There are some great pictures of the children. Mackenzie was Jasmine, Ashleigh was JoJo the Circus clown, my neice, Samantha was a bat and Katie (big sister to Ryan and Alyssa and best friend to Kenz) was Lilo. We met up with Jhryve', who was a Pink Lady. We went trick or treating at clinic and ended up at the 4th floor (bone marrow clinic), we saw all the nurses who were also in costumes and Ashleigh had her picture taken with several of them, including Sue, her nurse practitioner. Ashleigh had a tough night, she woke every 2 hours and cried.
Saturday my sister and neice left. Ashleigh had a good day, until about 8 or 9 at night. She then cried and started to shake. I gave her an extra dose of Ativan, as we have been previously instucted to do by DR. Kurtzberg. This episode lasted about 4 hours.
Sunday we picked Howard up at the airport and relaxed at the apartment. Ashleigh again had a hard time, the same symptoms...crying, shaking retching and sweats. This time I called Sue at clinic. We talked about the possiblies and the only thing we came up with was the wean of methadone we did last week. We increase it back up and Ashleigh has been much better. We are now waiting to see if she has more of these episodes. It was such a small amount of methadone that we took away and she was on it so long that we really shouldn't of had problems with withdrawl. We will see Dr. K at clinic in the morning to decide what to do from here. Ashleigh is still on the breathing treatments, however, she does seem to be having an easier time with her breathing, it is less labored.
Ashleigh and I went to the Kristoffs to hang out with Pam, Ryan and Alyssa. Ryan started playing a smiling and teasing game with Pam, and Ashleigh didn't want to be left out so she started to play with me. It was very excited. Later, I was going to help Pam with some of Alyssa's transplant care when Ashleigh was laying on the floor. I put one of Ryan's toy infront of her and she lit up in a huge smile. She absolutely loved this toy and was interacting with it with all smiles. It was beautiful, but sadly, we didn't have a camera. I am sure Ashleigh knew that! Stinker!
Mackenzie and Katie went to a halloween party with Howard and Bill, at Jamie's development (Jamie is Ashleigh's PT). Mackenzie won 1st prize for costume, but was too shy to claim her prize, so Howard had to. She is still talking about it today. She told me about all the scary houses and all the fun she had. We thank Jamie for inviting them over and giving Mackenzie a fun halloween.
Today, Ashleigh had a good day. She was moving all over in therapy today. The rest of the day she just hung out with her daddy. Tomorrow we have our Dr. K clinic. I will update at the bottom of this entry.
There are new pictures! Enjoy!
Wednesday, October 27, 2004 6:02 PM CDT
I tried to update last night but for sodose of IVIG. Just after they hooked her up, her blood pressure me reason it would not take it.
Ashleigh's Dr.K visit yesterday did not go as we thought or hoped it would.
Ashleigh had to get her monthly dropped to 48/25. It took eight minutes to get a good read, this is one type of seizure that she has. She also had some crazy heartrates and saturations. I started suctioning her every few minutes. Sue (nurse practitioner)came in, she ordered a respitory viral battery and a chest x-ray. Just after we returned from x-ray, Dr. K came in.
Her x-ray was clear, no fluid or fractures. Dr.K ordered a nebulizer treatment. Ash had that and then they listened to her wheezy chest again, it did sound better. She is now getting the nebulizer treatments at the apartment, 3 times a day. So we added a medication!
There's more...since Ashleigh's skin had a bit of GvHD, we could not stop the FK506. There's more...since her scalp had so much GvHD, we added a new ointment for her head only. Yes, another medication.
Good news...we did wean Methadone down to once a day! We are hoping to have her completely off of it in a month. We also stopped the flagil and cipro (antibiotics) this pass weekend. Event though it does not seem like it we are coming off of medications...just slowly.
Ashleigh had a wonderful physical therapy session today. I took pictures, I will have Howard update them this weekend. Ashleigh was very happy with Jamie (therapist), Ash even smiled. Jamie put Ashleigh in the stander, she really seems to like it. She was just hanging out. We also had to go to clinic for a breathing treatment (before our machine was delivered to the apartment) and to see Sue. She thought Ashleigh was much better than yesterday. We will have her rechecked again on Tuesday, unless there is a problem.
Howard, Mr. Bill, Mackenzie and Katie went pumpkin picking, for a hay ride and to a petting zoo. They had a nice time. We are going to have a busy week, having halloween fun. Howard then met me up at clinic for our Dr. K visit and Mackenzie stayed at Katie's. They have so much fun and a special bond. To each other, their lives and siblings are...well, "normal"
I was talking with another Krabbe mom last week and we were talking about the what if's...I was wondering what Ashleigh would be like and she was wondering what her son would be like, if there was never Krabbe. Don't get me wrong, we love our children, we accept them for the way the are. We just wonder..
Somethings that we shouldn't but can't help but wonder. Ashleigh will be 2 next month. I wonder if I would have to move all my china cups up or if she would be like Mackenzie and not bother with them. Would she be a tomboy or girly like her sister? What would her first word have been? That kind of stuff, stuff that doesn't matter, but we can't help but wonder. Stuff that wasn't met to be...God sent us Ashleigh the way she is and we love every inch of her. I just wish she had more...I want to hear her voice not only for me, but for her. Would she be a singer like Kenz or shy and quiet?
I know mentally Ashleigh is "normal" (I hate the word normal, that's why I put it in quotes, What is normal anyway?), I wonder sometimes if she has a favorite blanky, favorite song, does she really love JoJo the Circus Clown as much as I think she does? Do I drive her crazy with all the kisses? I don't know...I guess I will just wonder, until the day she can tell me. Someday soon...
Good night.
Sunday, October 24, 2004 8:59 PM CDT
CHECK OUT NEW PICTURE...MORE TO FOLLOW SOON!
So much has happened this pass week, I am not sure where to start...
Ashleigh had a couple of very tough days, she was checked out by Dr. Renwick and she was okay. Ashleigh's lungs were clear, it was was all upper airway.
Wendesday, there was a golf tournament for Ashleigh...it was very successful. We thank everyone who helped plan it and for all the supporters who were able to attend. Thank you so very much.
Thursday, Mackenzie had her flu shot. It was not as dramatic as I expected. She even stopped whining about it and is no longer favoring her arm. Howard and I were not able to get out shots, the doctor did not get his delivery.
Friday, we drove to Wilmington, North Carolina for a Hunter's Hope fundraiser. We ended up making a weekend out of it. We drove from NJ to Wilmington (10 hours), grabbed a bite to eat, went for a drive...ended up on a beach. It was a warm night so we took a walk. Mackenzie had her shoes off and played in the sand. She had a ball. I reminded her that we were not able to go into the water because it was too cold, apparently I had said it a couple of times, she said...I know, you told me and I put it in my brain. She played in the sand for a while and we headed back to the hotel.
Saturday, we went to the fundraiser. It was held by Chad Michael Murray (actor, One Tree Hill). There was a football game and during half time we took Ashleigh onto the field. Chad and Sophia Bush (actress, One Tree Hill) talked to us about what was needed for children with leukodystrophies and other 5200 patients. Chad could not stop saying how cute Ashleigh was (smart guy, huh?), and sweet Sophia cried when she met her and again, when Kelly (Hunter's Hope and mother of Angel David) showed her baby angel boy's picture. I can not tell you how sweet they were to Ashleigh and the rest of us. They asked questions about Ashleigh, Krabbe and how they can help. Sophia kept hugging us and giving so much support and kindness. I was so touched by both of their kindness. I could never thank them enough for lending their time and names to helping all children stricken with Krabbe and the kindess they had given Ashleigh. We went for a late dinner with Kelly and headed to the hotel. The day was much longer than any of us thought it would, so we spent the night again. We woke up this morning, had breakfast, Mackenzie went to the beach again, and we headed for downtown Wilmington. We walked the city streets, had some "superman" ice cream and headed for Durham.
Ashleigh is tired. She had a long weekend in the spotlight as a celebrity. She is doing well. Dr. K wanted us to stop her FK506 this weekend, so she would be off of it for a few days before we saw her but we were not able to. Ashleigh skin has been very broken out with GvHD and dry peeling skin. We will see what Tuesday will bring.
What a wonderful weekend, we haven't spent time like that together as a family. It was wonderful family time and we still spread the word about Krabbe.
Thank you Kelly, Hunter's Hope, Chad and Sophia.
Ashleigh will have therapy tomorrow, Dr.K clinic visit on tuesday. I will update after our visit with Dr.K.
I don't think I could every express the appreciation in my heart for everything...this pass weekend, week, year and a half...I will simply say Thank you.
Oh-another funny Mackenzie story...she loves the water, so she was asking about sharks. She wanted to know if there was once a shark without a mommy...you know, how did the first shark get here...I ended up telling her about Adam and Eve! Thank God, that was enough and we didn't have to go any farther into where babies come from!
See the pictures from he football game!
More pictures to follow.
Monday, October 18, 2004 12:32 AM CDT
Ashleigh has been doing wonderful. She does have some GvHD on her hands, feet and legs. She hasn't been fussing much and she has even slept in her own bed a few times. For some reason, her right hand is shaking alot. We will talk to Dr. K about it when we get back down to North Carolina.
Wednesday there is golf tournament to benefit Ashleigh along with a fall picnic afterwards. Ashleigh will make a special appearence there.
On Saturday after we get back to North Carolina, we are going to a football game to benefit Krabbe awareness and research. The information is below.
Howard and I got out for 2 hours last night. Thank you Nic and Ben for staying with Mackenzie and Ashleigh. We really needed a couple of hours.
We were going to go pumpkin picking on Saturday, but Mackenzie asked to wait until we were back in North Carolina so Katie could go with us. She really misses her.
I will update in a few days. The four of us are together everynight, Ashleigh is goind well, we are spreading awareness about Krabbe and life is beautiful. Thank you to all of you for your support and prayers, for everything!
ALL-STAR CHARITY FOOTBALL EVENT · Chad Michael Murray will be hosting an all-star football game to benefit Hunter's Hope. There will be drinks, food, great prizes to raffle off to several lucky winners in the crowd. You'll get to meet the cast of One Tree Hill, some of your other favorite stars. Plus, the event will include a special appearance by a surprise musical guest. [source: theWB]
WHEN: Saturday, October 23, 2004
TIME: Event starts @ 1:00 PM and the game @ 5:00 PM ET.
WHERE: Ashley High School in Wilmington, NC
Chad Michael Murray wants you!
On Saturday, October 23, in Wilmington, North Carolina, Chad will be hosting an all-star celebrity football game to benefit Hunter's Hope, a cause very close to his heart. Come meet the cast of One Tree Hill and some of your other favorite stars.
The game will be held at Ashley High School in Wilmington. There will a special apperance by a surprise musical guest and there will be drinks, food and great prizes to raffle off to several lucky winners in the crowd.
So, bring your family and friends and come join the fun and help raise money for Hunter's Hope. The event starts at 1:00 p.m. ET and the all-star game kicks off at 5:00 p.m ET. See you there!
Thursday, October 14, 2004 5:52 PM CDT
Tuesday...
We increased Ashleigh's feeds due to her loosing more weight. She is getting 150ml, 5 times a day. We even added her midnight feed back!
We made a few medication changes. Adding a couple of new ones, and increased a few...including her Topamax. Ashleigh's levels were down and she is still having seizures. We will work on getting her off of some of the other meds. including all transplant meds. in two weeks.
Wednesday...
We drove home for a short trip...
Thursday...
Ashleigh had to be suctioned alot today, we also did some chest therapy. She has been fussy on and off. Mackenzie is enjoying her "new" old toys. She misses her best friend, Katie. She even called her this morning.
Thank you...
Monday, October 11, 2004 5:30 PM CDT
Ashleigh had a wonderful night...she slept through until this morning. She had tylenol and extra ativan to help her.
She had a good day...awake alot and just a little fussing. She is not tolerating her feeds very well, she retches with each one. Her diapers have been much better also. Around four this afternoon, her secreations started to get think and she is sounding a little junky. I have the suction machine next to her just in case, but so far she is handling it.
Mackenzie left early this morning for the zoo and spent the entire day there. I talked to her for a very brief moment, just long enough to hear about the flamingos. By the time I got home from clinic with Ashleigh, Mackenzie was already bathed and getting ready to eat dinner.
Ashleigh and I went to visit Jhryve', while her mom went to the doctor. We sat around and planned our ladies night of hair and a pampering. I really enjoy talking with Jhryve' she is a wonderful young lady.
We headed to clinic late today. Ashleigh had her vitals and recieved a dose of IV antibiotics. Her weight is still going up and down, we are not sure why. We will get the results of her cultures back tomorrow when we see Dr. K. From there we will see..
Thank you for your kind support and prayers. Thank you for EVERYTHING!
Monday, October 11, 2004 2:33 AM CDT
It is 3:34 (eastern time). I was on the computer doing some research for therapies and treatments for Ashleigh, I paused to flip through the channels and stopped at CNN. I wanted to hear about Rumsfeld being in Iraq. Across the bottom of the screen I saw the headlines "Christopher Reeve dies at age 52". This can not be...
When Ashleigh was having her testing done to see if she was a canidate for transplant, I asked Dr. Kurtzberg if she thought Ashleigh would ever walk...her answer was "I believe Christopher Reeve will walk". Christopher Reeve stood for the handicap, he fought for better benifits and stem cell research, he was and still is an inspiration to us.
The strangest thing about this...I was on his web site. He has a page about children living with neurological and spinal cord injuries. I had just signed up for a newsletter from his foundation and to help raise awareness to the importance of stem cell research.
I can't say I was a big Superman fan, I really couldn't tell you about his movie career...I can just say he was hope. Please keep him and his family in your prayers. God Bless.
My update on Ashleigh's clinic visit is below.
Sunday, October 10, 2004 7:35 PM CDT
ANSWERS!!
Ashleigh had a fever and cried all night. This morning wasn't any better. I took Ashleigh into clinic, she had her ear and blood cultured. She does have an ear infection that we are treating with Ciprodex (ear drops) and we are giving her an IV antibiotic. We will have the final culture results by Tuesday. Our trip home will not happen if the blood is positive for infection. This explains why she has been so uncomfortable, crying and the temp.
Hopefully, now we can start to make Ashleigh comfortable and move forward. We are going to give her the extra ativan until the antibiotics kick in.
Pam and her mom brought Mackenzie home tonight. They came into see Ashleigh, well, she was little miss social. Looking around, clicking her tongue and moving her arms. Mackenzie is going to go to the zoo tomorrow with Katie and her grandparents. It should be a nice day. Ashleigh has her second dose of IV antibiotics and then we are going to Jhryve's.
I will update after we get the culture results and see Dr. K.
Sunday, October 10, 2004 7:35 PM CDT
ANSWERS!!
Ashleigh had a fever and cried all night. This morning wasn't any better. I took Ashleigh into clinic, she had her ear and blood cultured. She does have an ear infection that we are treating with Ciprodex (ear drops) and we are giving her an IV antibiotic. We will have the final culture results by Tuesday. Our trip home will not happen if the blood is positive for infection. This explains why she has been so uncomfortable, crying and the temp.
Hopefully, now we can start to make Ashleigh comfortable and move forward. We are going to give her the extra ativan until the antibiotics kick in.
Pam and her mom brought Mackenzie home tonight. They came into see Ashleigh, well, she was little miss social. Looking around, clicking her tongue and moving her arms. Mackenzie is going to go to the zoo tomorrow with Katie and her grandparents. It should be a nice day. Ashleigh has her second dose of IV antibiotics and then we are going to Jhryve's.
I will update after we get the culture results and see Dr. K.
Thank you for EVERYTHING!
Saturday, October 9, 2004 11:50 PM CDT
Ashleigh's heart rate returned to normal early last night. Her body temperture is still a little higher than normal. I am taking her to clinic in the morning to have her checked out and a blood culture. She finally stopped crying around midnight. I gave her extra Ativan to help with the seizures.
Our friend Haley is inpatient in New York, please say a prayer for her to have a negative culture and she is home soon. Oh-please add a prayer for her mom not to murder the doctors up there.
Ashleigh has good days and bad days. We have no idea what sets her seizures off. Her crying is triggered by the seizures. Some children have seizures from pain.
Ashleigh also has several cries. We can tell the difference between her hunger, pain, seizure and spoiled. She even tells us that her diaper needs to be changed.
Ashleigh's bad days are also no reflection of who is caring for her!
Thank you, Kelly for letting me vent. You are right, not worth the energy.
I will let you know how Ashleigh's makes out at clinic. I don't think I will know anything until after the cultures grow out...by Tuesday or so. If Ashleigh continues to have these bad days, going home will be pushed back. We are not leaving until we are sure that Ashleigh will be okay. We don't have a neurologist anymore, so we are not taking any chances.
Even though Ashleigh's immune functions are coming back, we are still going to stay isolated for some time. With it being cold and flu season, I don't want to take the chance of Ashleigh getting sick. Her immune system is still very weak. Illness and infections are still deadly to her. We are also going to continue to give Ashleigh IVIG through the winter. We will have the same restrictions as last year. Limited visitors and staying out of public, strict handwashing, mask and so on...
Ashleigh's safety is first.
Saturday, October 9, 2004 11:50 PM CDT
Ashleigh's heart rate returned to normal early last night. Her body temperture is still a little higher than normal. I am taking her to clinic in the morning to have her checked out and a blood culture. She finally stopped crying around midnight. I gave her extra Ativan to help with the seizures.
Ashleigh has good days and bad days. We have no idea what sets her seizures off. Her crying is triggered by the seizures. Some children have seizures from pain.
Ashleigh also has several cries. We can tell the difference between her hunger, pain, seizure and spoiled.
Ashleigh's bad days are also no reflection of who is caring for her! Our days are always easier when her daddy is here. There are two people doing the work. When I am here alone I do all the work. I don't get to hold Ashleigh all day and watch tv. I draw medication (33 doses), feeds (4, g-tube feeds), baths, lotions (2 lotions, 2-4 times a day), massages and comforting. Some days we add oxygen and suctioning. Oh - than I have to clean the apartment and ummm take care of Mackenzie...feed her, bath her and try to give her a normal life. So, no when I am down here by myself...I am not sitting on the couch...eating bomboms!
That will also explain why my journal entries are at 1 in the morning, eastern time!
No - am not complaining about caring for my children. I love my job. I would not change it for the world. I just don't think some people realize my day, so I thought I would share.
Sorry...needed to vent!
I will let you know how Ashleigh's makes out at clinic.
Saturday, October 9, 2004 5:59 PM CDT
I did an update this morning, but I lost it before I could save it. Good thing...it has all changed.
This mornings update said that Ashleigh is doing great, she was awake all day, very little crying and she slept through the night. I said how she was tolerating her feeds and her "dirty" diapers have cut back...
This afternoon, Ashleigh became very irritable. I can not keep her calm. Her heart rate is jumping all over...from very low to very high...then normal. Her oxygen has stayed in the 90's. Her body temperture is also very unstable. I gave her tylenol (before I knew of the temp) but it didn't work. I don't want to give her any more because we don't want to mask a fever. I talked to Dr.K, she feels that this is all part of her seizures. I gave Ashleigh a extra dose of one of the seizure medications and we are waiting to see if that does anything to help Ashleigh. She has stopped crying, her heart rate is better, we are just waiting on the temperture to return to normal. It is jumping form 94-101.
I just want Ashleigh to get a break.
When Mackenzie makes a wish, she always ask for her baby sister to get better. My wish are for Ashleigh to have good days, one day at a time. One good day, then another, then another and so on. Days that she will have comfort, pain free, crying free and happiness. Of course, I still want her to have total and complete healing, talk, walk and play...they are long term dreams. Today, as a mom, I just want my baby to have comfort.
On to other things...we voted. Howard and I sent our absentee ballots in, since we will be in Durham.
DOLLARS FOR DUKE!
Ashliegh and I are working with our friends Eleasha and Cody (Cody transplanted for Leukemia last year) for a fundraiser for Duke PBMT. I will have the information soon. For a donation of $3.50 or more, you can choose between three pins (a gold ribbon, a ribbon with a guardian angel and a christmas tree with a gold ribbon around it). Please let me know if you are interested in making a donation and I will forward you the information. Thank you for your continued support and prayers...
Tonight please pray for comfort for Ashleigh and all of our dear, sweet friends.
Friday, October 8, 2004 12:12 AM CDT
Ashleigh is still having some crying issues, not as many. I think Dr. K might be right about treating her like a healthy two year old. Last night, Ashleigh was crying, I comforted her...rubbed her back and talked to her. Well, it didn't work. She stopped crying after I put her in bed with us. She spends so much time in our arms and laying with us that it is going to be hard to break the habit. When Ashleigh first started showing symptoms of Krabbe she would wake 11 times in one night, so it was easier for her to sleep with us. During transplant, she wanted to be touched and held so after 5 days of sleeping in a chair like a pretzel, the doctor and nurses said that was enough. We couldn't do that for the 30 days that we were expected to be inpatient, so they took Ashleigh's crib out and got a bed for us both to sleep in. She was sleeping in her own bed more, but lately she is demanding us. How do we say no the her after what she has been through? Yet, the Krabbe does not effect her thinking so she knows she is getting away with stuff!
I talked to a reporter yesterday, he is doing a follow up article on Ashleigh. He just wanted to know her prognosis from here, what it was like on us...me being down her by myself with the girls and Howard traveling back and forth. Emotionally we are drained. I told him that the important thing for people to know is that Ashleigh would not have the amount of damage that she does if we had newborn screening. Ashleigh is at a point in her journey that I feel it is important to educate...about stem cell transplants, about Krabbe and newborn screening. I feel that Ashleigh and our family has recieved so much this pass 14 months that we need to give back. It is like the movie Pay It Forward. We need to pass it on. We will do that in anyway that we can. God has a plan, there is a reason for us to travel this journey and now we must act on it. Honor Ashleigh and the friends that we have made along the way.
Hey, this is funny...last night when "Mr. Bill" brought Mackenzie home. Kenz ran and got a juice box for Katie. She then asked us to get her a drink, Howard said she could get a juice box....Kenz sat down real fast and said "Daddy, I just sat down." It was so funny. She continued to tell us about her tough day of walks and playing. Earlier in the day, I took Mackenzie, Katie and Ashleigh for a walk. Well, Ashleigh started to cry because it was close to feeding time. Mackenzie and Katie complained that they were hot, the sun was in their eyes, they were tired and their feet hurt! They are four and five!
Ashleigh had PT today, she did okay. A little stiff and she gave attitude to the therapist. He was new so she took advantage of that. She had a small seizure today. We are going to relax today and take a walk later after dinner. We were going to go on a hay ride and pumpkin picking with Jackson and his family but Howard wants to go, so we will next week. Ashleigh is going to get her first haircut next week when Howard is with us. Very exciting!
Ashleigh is starting to hold her smile for a longer, so hopefully I will get a picture soon! I promise that will be posted as soon as we get it!
Thank you Laura for the package! It was too kind of you!
Thank you all for your continued support and prayers.
Tuesday, October 5, 2004 6:36 PM CDT
Okay so the roller coaster ride continues...
Ashleigh did better last night, not as much crying. Today, she did cry alot, but still it was better. Her "dirty" diapers have slowed down.
Tonight, Dr. K came in and picked Ashleigh up. They sat down in the chair and Ashleigh went to sleep. Dr. K offered to stay home with her, and not work! I said, Ashleigh would be well taken care of but I think I would have some very angry parents after me. I said maybe just for the night, she said sure her board was full and there was alot of patients waiting for her. Ashleigh slept happily in her arms for about twenty minutes. She didn't feel this was Krabbe or a set back...just a pause in recovery.
Her culture for c-diff was negative. There could have been a stomach bug that caused all of this to start and now she is over tired and we have to try to get her on a schedule.
We are going to start her on Celebrex, to replace the Vioxx.
I mentioned a couple of weeks ago that Sue and Dr. K went to France for the Myelin Project. Dr. K said that there was a lot of talk about drugs like Vioxx and Celebrex helping with the inflamation in the brain and nerves, we are going to treat it just in case. Ashleigh is unable to tell us if she has a headache.
Thank you for all the extra prayers...
Please keep the Joiner family in your prayers, Trevor became an angel yesterday, joining his little brother Ross in God's arms.
caringbridge.org/tx/joinerboys
Monday, October 4, 2004 7:22 PM CDT
In order to read tonight's entry, you should buy a ticket, put on your seatbelt and prepare for a ride...a roller coaster ride.
Whenever thing go good we have more set backs. My last entry I said Ashleigh was fussy on Friday night and Saturday...well it has continued. I took her to clinic yesterday because her heartrate was VERY high and she was crying...a sign of pain. We really couldn't do anything for her on a Sunday, so we gave her extra Ativan. The Ativan was suppose to help her sleep through whatever was bothering her. It didn't work. Today Howard flew in and met us at clinic. Thank you, Kelly for picking him up. Ashleigh had her stools cultured. She has been having alot of dirty diapers and she is loosing weight. She is down to 9.9 kilos, she was 11.4. Then we went for x-rays, 6 pictures where taken. Because of the increase in crying, they were looking for compression fractures. Her films were negative. NO FRACTURES! So far the stool culture is negative for c-diff. We are treating her for it just in case. She may have a stomach bug that we will not be able to identify.
Her crying is uncontrolble, it reminds me of when she was being diagnosed or during transplant when she had bone pain from her new cells coming in. She just cries. I try everything to stop her but nothing is working. Please say a prayer for this pain to go away.
We see Dr. Kurtzberg tomorrow. Hopefully we can sort this out.
Thank you for your support and prayers.
Saturday, October 2, 2004 8:36 PM CDT
I wish I could say that Ashleigh had a great day. She did not. She has been crying and/or fussy most of the day. I have to go out tomorrow and get Motrin. I am hoping that it is her teeth or the weather (I'll explain in a minute). She has been off of the Vioxx for two three days now, so it could also be the inflamation getting to her. Motrin hopefully will work. I don't want to start her on the new medication, Naprosyn, but if she is uncomfortable then we will. The most important thing in this journey has been comfort.
Today we went to a birthday party for Kelly Brown. I have spoken about Kelly in the past. Kelly's son, David, also had Krabbe. He is know a beautiful angel in heaven. Kelly also works for Hunters Hope as the family coordinator and assist the families here at Duke. We had a wonderful time, most of the families here for treatment were there along with some from out of town. We talked about the future of our children and the need for newborn screening. Hope you had a great time and enjoyed your party, Kelly. Thank you for all the things you do, especially the laughs.
Mackenzie is in her room singing and Ashleigh is in bed. She was very tired so I put her in her room so she wouldn't be bothered. I need to clean up a little.
Oh the thing about the weather...Jhyrve Sears (16 year old, 6 months post transplant for Krabbe) said that sometimes the thunder storms bother her nerves. Something with the vibrations and the nerve damage. Jhyrve is amazing. She is going through what Ashleigh is but she can tell us how it feels. She has done so much for understanding this disease. She is a beautiful young lady, both inside and out. We thank her for her willingness to talk to the parents of babies/toddlers, so we can take better care of our kids.
Please pray for all the children on 5200, who are fighting a beast and who have lost their lives at young ages. Also, please say an extra prayer for baby Joshua who is in PICU on a vent. He is a newborn transplant for Krabbe, who is having a difficult time.
We thank all of you for your continued support and prayers.
Friday, October 1, 2004 11:58 PM CDT
Ashleigh has a good day...awake a whole lot. Dr. Bean (former neurologist) didn't want Ashleigh on Zonegran because he said she would be too sedated. She is more awake than ever!
Jamie came today, she brought a present. A stander...we are only borrowing it while we are here but it is really nice. Dr. Escolar wanted to start Ashleigh at a 5 % angle, and slowly move up...5 % every 5-7 days. Today we just fit Ashleigh for it. She can not actually use it until her AFO's are in. They left a message on our New Jersey answering machine that they are in and we need to make an appointment next week to bring Ashleigh in to have them checked.
We are not using the Vioxx, she did well yesterday. Tonight I gave Ash some Motrin because she was extra fussy. She is getting alot of teeth so I am hoping that is all it was tonight.
I keep remembering to tell you more about our visit with Dr. K on Tuesday...she said we have to get use to the idea that Ashleigh can think and mentally she is normal. She can not express herself and do the things other kids can because of nerve damage, causing the lack of motor skills. She can not talk because of the nerve damage, not because she can't think. So, we have to start treating her like we would if she was healthy. She will cry to throw a temper tantrum and she will test us. She will just do it differently than other kids. She recommends us letting her cry for 5-10 minutes at night when she is going to bed, only going in to talk to her, rub her and leave. Not picking her up. Yikes! We are going to increase her feeding by mouth and hopefully we can build her up to eating enough calories to take out the tube. The tube will not be used for 3 months before we remove it...this won't be for a year or so. We also increase her tube feeding because Ashleigh is loosing too much weight (almost 3lbs). She is thinning out alot because of being off of steriods, but she still needs to keep the weight. She is growing alot in length...as you can see in the new photos.
I have been doing alot of thinking about being parents...I don't know if you know unconditional love until you become a mom and dad. Yes, you love your spouse, but loving your child is amazing. It doesn't matter if your child is sick or healthy, if they are your blood or adopted. Once you look in your child's eyes and say "I am your mommy (or daddy), there is a love that nothing can change. Children aren't perfect, they do misbehave. They are not computers to program. They may not say thank you when they should, they may spill stuff or talk back but they are all so incredible. They may not date who we like or get the grade that we expect but either did we as children. I remember when Mackenzie cut her hair last year...I started to yell at her but you know what...I did it. I talked to her about it and explained why she can't do it, but I didn't punish her. They may be brats, but we all were at times, some of us still are. Anyway, the point of this rambling is because...here (in Durham) there was a woman who beat her baby. I just wonder how, where was her love for that sweet innocent child. They are all the most precious gifts, why as adults we don't always remember that? So tonight, hug your children, count to ten before yelling at them and remember how very lucky you really are to have a children.
Best wishes to our special friends Debbie and Greg...we couldn't be happier.
Tuesday, September 28, 2004 5:00 PM CDT
NEW PICTURES!!
Thursday Update: Howard's mom called this morning telling that Merck is pulling Vioxx from the shelves, due to increase risk for heart attacks and strokes in patients that have been on it for 18 months or more. Well, Ashleigh has been on it for 11 months. I called Sue, she said she just got the email from the FDA. She was waiting for a call back from Dr. K to see what medication to switch to and then had to call all their patients to tell them. We are going to take Ashleigh off of it and try not to replace. We will see how she does without it. The National Institute of Health (NIH) recommended Vioxx for leukodystrophy patients because of the inflamation in the central nervous system. The FDA just approved Vioxx for use in children 3 weeks ago. The rest of the day we played, cleaned and did crafts. Ashleigh has therapy tomorrow.
Wednesday Update: I forgot to mention yesterday, Dr. K wants us to feed Ashleigh baby food twice a day. Slowly increasing the amount. Ashleigh had a pretty good day today, awake alot. She did fuss a little and gave Jamie some attitude during PT. Headed to the airport for Howard to go home. It stinks, I think he is one of the very few fathers who can't be here full time. Most fathers take a leave of absence from their jobs. I hate doing this on my own, but I also know who much it hurts him everytime he has to leave Ashleigh and Mackenzie. Praying that if something went bad, he would get here in time. I can't imagine what goes through his mind each time he leaves.
What a great Dr. Kurtzberg visit!!
Ashleigh did well, Dr. K sees alot of improvement since we have been here. She is having less seizures, so Dr. K thinks we found the combination of medication that will work for her.
We are stopping her Diflucan and her Bactrim. Both she takes to protect her while her immune system was down. Next week we are going to take her off of the FK506. We hope to control the GvHD by Protopic (FK506 in a cream form). Two weeks after that we will remove the rest of her transplant drugs! We are at the end of our transplant journey...now we will focus on therapy and repairing her nervous system. Dr. Kurtzberg wants us to start working on getting Ashleigh back to her normal routine. She thinks we will be home by Thanksgiving. We will see, we have to find a neurologist that is comfortable with the seizure medications that she is on and be willing to work with Dr. Kurtzberg. That is more difficult than it sounds.
I will update more later...dinner is here.
Monday, September 27, 2004 12:26 AM CDT
Sorry it has been a few days since my last update. I have tired and emotionally drained.
First, our friend Jordan has earned his wings. Yesterday morning Jordan's body just could not take the fight and he went to heaven where he is free from medications, tubes and pain. Please pray for him and his parents.
caringbridge.org/il/jordan
Thurday night Ashleigh had another one of those bad seizures. She also had a slightly higher body temperture and was sleepy. At clinic on Friday, Sue kept us around a bit, to make sure we were not missing something. Ashleigh's temperture was back to normal, 96. We thought she was going to need a red blood cell transfusion, but again, her bone marrow did it's job. She keeps dropping low and then pulling them up. So far we have avoided transfusions. She has not had anymore seizures, fever or rash. Thank you Pam for taking Mackenzie from clinic with you and Bill for picking Howard up at the airport and bringing him to clinic! You guys are great!!
Ashleigh has had a couple of great days, I feel good about where she is now...kind of like we are getting back on track. Saturday we went to Duke Gardens to walk around. It is so relaxing there, Ashleigh is allowed there and Mackenzie loves it. We fed ducks, had a snack and walked around. Mackenzie likes to know the names of the flowers and plants. I took some great pictures. I will have Howard update pictures when he gets home.
Last night we had a new krabbe family over for dinner, they are getting ready to go into transplant. Jackson is so cute and we enjoyed talking with his parents. I will update with his web page soon. Please keep this little guy in your prayers.
Ashleigh had PT today, she did great. I took pictures. Again, soon, I promise!! She watched JoJo the Circus Clown on TV and now she is sleeping. Howard and Mackenzie are spending some time together running erands.
We see Dr. K and Sue tomorrow. Hopefully we have news or a plan set up.
Thank you for you continues support and prayers.
Thursday, September 23, 2004 7:11 PM CDT
Sorry for not updating after clinic. Internet was down.
Clinic went well and fast...Dr. K was out of town. She was going to 4 cities in 5 days! The woman is amazing.
Tuesday News: Sue was okay with us not increasing the FK since her skin looked better. Told me to use my judgement if I thought we needed to add the extra dose. Her new seizure med is at level now, so we are hoping to see the seizure fade out, if not than we have to start changing other seizure medications around. Everything else was just about the same. Home from clinic by 2!! Mackenzie stayed at Katie's all day, playing.
Wednesday News: Sue had given us a NG tube to tape to my finger, hook formula to it and as Ashleigh sucks my finger, I slowly push the formula in. We did it at every feed since and she is eating 4ml of formula!!! She will suck on anything in her mouth except a bottle. She did so great with it. The rest of the day was the same...cleaning, playing, medications and feeds. Katie came to play with Mackenzie.
Today...Ashleigh had feeding therapy today. She did well. Her therapist is very nice. Ashleigh seemed happy. We cleaned up and sat around the rest of the day. Katie came over and then "Mr. Bill" (aka: Katie's dad) took both girls to the playground. Mackenzie and Ashleigh had their baths and we are watching Stuart Little.
We are going to clinic early in the morning. Ashleigh has pink eye and we have to have her rash looked at. She also had a few seizures today, one was a bit larger than usual. She had a slightly higher body temperture today. Not high enough to take her for cultures, so we are just watching it. Howard is coming in tomorrow. Hopefully, he will be able to stay for a while. I am so tired and emotionally drained. Ashleigh had PT in the afternoon and then we are hoping to go to Duke Gardens to feed the ducks...before the next storm comes in.
So speaking of emotions...here I go...
I think it is just all the news of our "friends" and the isolation that we are in again. Thank you...Kelly, Pam, and Lauren for the phone calls. They are a wonderful break and I enjoy the adult conversations.
I was telling someone about another Krabbe kid that is here and having a little bit of trouble. They said do I know him...well no they don't but these krabbe kids, 5200 kids, and caringbridge kids are extremely close to my heart. This whole journey is huge, bigger than one child. It is about children suffering and dieing. It is about parents begging for more time with their babies. There is a child in PICU tonight, who may not make it. There is a story that needs to be told about each of these children. I fall in love with each of them, whether I met them through clinic, 5200 or just on the computer each night. All of these children have a story and they need to be told and heard. It does not matter who is doing more than the other, who still has what skills...we celebrate each of them for the abilities and life they have. For the accomplishments they make, no matter how small, no matter what disease or what part of treatment they are in. They are all beautiful. We celebrate that angels that so bravely fought and went to rest in our Lord's arms.
Please pray for all of our special friends and angels...for they all are so very special. Thank you for everything.
Big day is Washington...Thank you Micki! For those who read the guessbook, Carolyn referred to the new newborn screening test. Our congressman, Rob Andrews is working on a bill along with several senators. Here is a news artical that was just released. Thank you to the parents who go to their state house and to Micki and Jim for their trips to D.C. One day children will be saved and have better quality of lives because of these test.
U.S. Advisers Endorse More Newborn Tests
Thu Sep 23, 8:27 PM
By LAURAN NEERGAARD, AP Medical Writer
WASHINGTON - States should test every newborn for a core set of 30 rare but devastating inherited diseases, a government advisory committee recommended Thursday.
Advisers to Health and Human Services Secretary Tommy Thompson endorsed a long-awaited study from leading geneticists that called for the 30-disease check, although exactly how to implement the change is still under discussion.
Thompson now will consider whether to accept that recommendation; a spokesman couldn't say how quickly a decision might be made.
In the meantime, the endorsement likely will increase pressure on many states to add to the amount of newborn testing they currently offer.
There's tremendous geographic variation: Fifteen states require testing for five or fewer of these diseases, 19 test for 25 diseases or more, and the rest fall in the middle, according to the U.S. National Newborn Screening and Genetics Resource Center.
"There's evidence that states are not moving ... and that babies are dying," said University of Miami pediatrician Dr. R. Rodney Howell, who chaired the federal advisory panel.
Today, every U.S. baby is tested for two rare diseases that can cause retardation if untreated: hypothyroidism and the metabolic disease phenylketonuria, or PKU. Most also are tested for sickle cell anemia, a blood disease.
But with a single drop of blood, new technology can check babies for several dozen other serious, sometimes life-threatening genetic diseases, many with such tongue-twisting names that they go by acronyms, such as MCAD. Each is very rare, but many are treatable if discovered early _ and for others, knowing one child is affected can influence whether parents have another.
The testing costs about $50 per person, covered by insurance, but requires states to invest in expensive equipment and training of lab workers.
At the federal government's request, the American College of Medical Genetics studied which of 84 genetic diseases come with accurate enough tests, and for which early diagnosis is important, to recommend for standard screening. It settled on a core list of 30.
Thursday, the federal advisory committee endorsed that report on an 8-0 vote, with two abstaining. The advisers will continue to study how to help states finance increased testing and how to educate parents.
Parents' groups are lobbying federal and state governments to end the geographic disparities, and welcomed the recommendation.
"I'm extremely excited that it looks like babies will get the help they deserve," said Jill Fisch of the Save Babies Through Screening Foundation.
Meanwhile, expectant parents who live in states that don't screen for all 30 diseases can buy test kits from private screening laboratories to bring to the hospital on delivery day. That supplemental testing costs $25 to $100, depending on the lab.
Tuesday, September 21, 2004 0:10 AM CDT
Happy Fall Y'all! I love the fall...it is my favorite time of year. The color of the leaves, the pumpkins, apples, cider. I just love it all. Both, Mackenzie and Ashleigh's birthdays are in November. It is hard to believe that Mackenzie will be five and Ashleigh two. It is amazing what Ashleigh two years on earth have been like, how different my two girls are and the bond that they have. Mackenzie is very attentive to her baby sister and Ashleigh responds to her big sister.
Ashleigh had a good session with Jamie(PT). She responded well to her, even gave her a little attitude. Jamie put Ashleigh up on her knees, Ashleigh kept pushing to get herself out of the position. I was excited, she is moving on her own. She did have a little trouble with the rolling today. Jamie would roll her legs and hips and Ashleigh is suppose to bring the rest of her body over...today she needed a lot of help doing it. Was she unable to do it or just being a stinker?
Her skin looks great. She does still have a little bit of GvH but it is not bad at all. The best part was...I forgot to give her the extra FK on Friday because I had all the medications drawn up before we even went to clinic. I never added the extra FK. Saturday her skin looked better, so I still held off. So, she cleared it up on her own.
Ashleigh did have a few seizures this weekend. One very bad one...I had to give her extra Ativan to stop it, if that didn't work we were going to have to go into 5200. She had two today. Not terribly big ones, just enough to upset both of us. She cries afterwards and it is so sad to see her little lip going in and out, and not being able to do anything for her. I also had to suction her a few times today. I watched her pulse ox a bit closer today also. She just seemed uncomfortable. Her heart rate was a little high so I gave her tylenol in case she was in pain.
We have clinic in the morning. Mackenzie is going to play with Katie.
Ashleigh's AFOs should be here soon. Jamie went over some standers for Ashleigh. We also have to check with Dr. Escolar because she was very concerned about the type Ashleigh went into. We have one that belong to another Krabbe kid, LeA, but it does not do what the doctors want so we have to get a new one. Jamie has also been giving me ideas for some therapy toys and methods to help Ashleigh. She brought over some catalogs. I want to get some ideas for birthday and christmas presents for Ashleigh. It is hard to buy for her. Not like Mackenzie where I can go just about anywhere and get her a barbie or polly pocket and it would be perfect. Ashleigh's toys are all for therapy and come from these catalogs for "special" children.
Sarah's visit was a wonderful. It was so great to see someone from home. Saturday, it rained most of the day. We just sat around the apartment and watched movies, played and colored with the kids and did our nails. I painted Ashleigh's nails. Sarah did Mackenzie and Katies. Saturday night we made a nice dinner. Sunday was beautiful here in Durham...the hurricane brought clear blue skies behind it. It was only in the 70's, so we packed a picnic lunch and went to Duke Gardens. We fed the ducks, turtles and even catfish...Ashleigh was "throwing" bread. We then came home and colored with Mackenzie before taking Sarah to the airport. I wish she could have stayed longer. It is not exciting down here. We don't really go anywhere, except clinic or the gardens. I felt bad that I could not take her more places but she didn't seem to mind.
I will update later this afternoon...I will just add it to the bottom of this one. Thank you so much for still checking in on us and for your continued support. Have a great fall day!
Friday, September 17, 2004 8:11 PM CDT
Ashleigh went to clinic today...we were hoping that Ashleigh's rash would be better and we could keep the FK down. Well, we ended up going up on the FK. Actually, we doubled it. She also continues to have seizures. Six of them, early this morning.
Sarah is here, she arrived last night. We all went to clinic and went for a drive...I got lost. We got our part of Ivan...mostly rain and wind. We just missed a tornado in our apartment development. Nothing bad, just some down tree limbs.
We go to clinic again on Tuesday, hopefully Ashleigh's rash will be better and we can go back down on her medications. No new news on the seizures, we may have to start looking for other seizure medications to try to control them.
Sorry for the short update, feeling a little tired.
Tuesday, September 14, 2004 5:26 PM CDT
On Sunday, Ashleigh had a bit of a rash. Nothing bad. We didn't think much of it. Monday it was all over her legs, arms and face. Nothing on her trunk. We went to clinic, our nurse practitioner was still in France with Dr. K, so we saw a different one. Well no one knew what it was. They only ruled out the chicken pox. So, first thing this morning, we went to clinic. Sue looked at Ashleigh for a good half hour, she had no idea. Dr. K came in....Graft vs. Host Disease. It is presenting itself a little different than it has in the pass. It is spread all over and it is kind of scabbed. We thought for sure if was something infectious. But no...thank God! Instead of going back up on her FK506, we are going to try to control it with Protopic. Friday we are going to go to clinic again. If we can't control the GvHD with the cream than we have to go back up on FK and Ashleigh will not be able to be weaned from all her transplant drugs. Yuk!
Her EEG didn't show much, just that there was alot of potential for seizures, alot of spiking. No actual seizures we captures. Dr. K said that we can see them clinially, so all it means is that she didn't have any while hooked up on the EEG.
Ashleigh's hemoglobin dropped so we have to keep an eye on it, she may need a transfusion. Last time her bone marrow kicked in and did it's job. We will see.
Everything else is going good. Mackenze and Katie haven't played in a few days, but they talk on the phone like teenagers....or maybe just like their mommies!
Monday, September 13, 2004 8:44 AM CDT
Yesterday, we woke up and decided to go to the zoo. So we packed a picnic lunch, all of Ashleigh's supplies and hit the road. It took a little over a hour to get there. We ate lunch and then went it. It was nice, very natural. Open areas for the animals to run, swim and move around. It was a little long in between attractions but worth it because the animals had a lot of space. It was over a mile long to walk. Mackenzie could have sat and looked at the flamingos all day. She loves them. Howard and I liked the grizzly bears, they were fighting over something in the water. Ashleigh enjoyed being outside. They had a bus to take you back to the other end, to the parking lot. That was hard, the bus driver knew that Ashleigh's kid kart was a wheelchair. She opened up the side of the bus and had the lift take Ashleigh into the bus. It was hard to see that for the first time. Reality hits, again.
We came home, had dinner and relaxed.
Today we are just going to stay in...very hot outside!! Maybe we can go swimming, late afternoon or early evening.
Oh...Saturday Mackenzie got her hair cut, above her shoulders!! She looks great. She was mad that it wasn't short enough. I told her it was something we had to ease daddy into. Not like me, I just cut it all off on Saturday, to my ears! The stylist was so nice...but what was odd was she had a magnet sitting on her table it was a bible verse that Jill Kelly (Hunter's mommy) refers to..."for I know the plans I have for you. declares the Lord.Plans to prosper you and not harm you. plans to give you hope and a good future". It suprised me to see the magnet, Donna (stylist) insisted I take it with me along with her home number, in case I need something. She was so sweet. On September 11, 2001, we saw that there are so many wonderful people in this world. Since Ashleigh got sick we see it everyday, there are so many wonderful people that we have met along this journey and each one holds a special place in our hearts. Thank you for everything you do...
Friday, September 10, 2004 6:33 PM CDT
First...please, please pray for Jordan. He had his second transplant today, but still remains in PICU, in critical care. caringbridge.org/il/jordan
Ashleigh had her EEG taken off today. We should get the results on Tuesday when we see Dr. K. Hopefully, we were able to get a few seizures on "tape" so we can better treat her. Everything else has been slow. Mackenzie and I went to rent movies, Shrek and Jungle Book. Howard took the van to be checked at the dealership, a light keeps coming on. They had to order some parts and it has to go back next week. Mackenzie went swimming with Katie and her grandparents, Ruth and Marty. The rest of the day we just lounged around. Pam and Alyssa got a four hour pass for freedom today, on Tuesday they will be discharged from 5200! Way to go sweetie pie!
Yesterday, Jamie (new PT) came over to evaluate Ashleigh and do a little therapy. She said our insurance company is question the need for home therapy. I called them today and explained, even with the immune system coming back, it is still very immature and she does not have any vaccines so going around groups of therapy will be dangerous to Ashleigh. Also, Jamie said that the amount of therapy Ashleigh requires, going to a facility everyday will be insane and stressful on Ashleigh. We would have to pack Ashleigh up, a regular diaper bag, medications, suction machine, oxygen and pulse ox! Therapy at home will be better for everyone. Plus, Ashleigh likes her own toys, when we go to Dr. Escolar's office, Ashleigh will not do anything. She opens one eye, and closes it real tight. At home, she interacts with all her therapist and works her tiny butt off.
Please remember those who loss their life on September 11th, our nations leaders and our troops as they fight terriorism.
Thank you for your continued support for our family and all of our friends.
Wednesday, September 8, 2004 8:22 PM CDT
Busy, Busy, Busy!
8:30 this morning, Ashleigh had her EGG put on. Howard and Ashleigh returned at 10:30. She did well...she has a cone on her head. Of course, we don't see any seizures today. Why would we...she has 9 on Tuesday...when she doesn't have the EEG on, nothing when she does!
At 1:30, Howard and I both took Ashleigh to have her AFO's made. It was interesting. They cast her legs and then cut them off her. They are only making ankle supports for her, because she has good rotation. I picked out the colors and "decorations" for them. Pink padding, pink velcro and white "ribbon" with hearts. So cute! She will also be able to get shoes that can fit over them, we will go to look at them after we receive the AFO's...in about 3 weeks.
Mackenzie went swimming with Katie and her grandparents. Thank you Ruth and Marty for taking Kenz the last 2 days!
We got home at 4, I went food shopping. Howard played with Ashleigh and Mackenzie.
Ashleigh has to go to the hospital to have the battery changed on the EEG machine tomorrow. She then has a appointment with Jamie, our new Physical Therapist. Again, a busy day.
I think Friday...we may be off. Hopefully, our weather will be nice so we can go to Duke Gardens or the zoo.
There is an international conference for Leukodystrophies in France this weekend. Dr. Kurtzberg is going to be there. Hopefully these wonderful, who dedicate their lives to helping children like Ashleigh, will be close to coming up with a cure and farther treatments for all children who suffer with diseases in the white brain matter. We can only pray.
Good night.
Monday, September 6, 2004 10:35 PM CDT
What a crazy day...weather wise, I mean. It was nice and partly sunny and then the sky just opened up and started pouring rain. All about 5 minutes after Mackenzie left for the pool with Katie and her grandparents. They stayed, the rain stopped within a few minutes. After they brought Mackenzie back, it started to rain again, this time the road was flooded within minutes. Again, it stopped. Crazy!
Mackenzie also went to the doctor this morning, she has had a cough that was not going away. Well, they came up with allergies and an ear infection.
Ashleigh rash over her port is completely gone. She is still having seizures. Not as many. For some reason they seem worse at night. I don't know why. Her skin is clear, so we are hoping Dr. K will wean her FK506 at clinic tomorrow. I don't think anything else would get weaned. Wednesday Ashleigh is getting fit for her stander and AFO's and then having the 24-48 hour EEG placed. Hopefully, Thursday she can start physical therapy. Her therapist is going to be Jamie, a few other Krabbe kids have had her and they really liked her.
Tonight we had girls movie night, Pocahontas II, popcorn, and M&M's with some apple juice in fancy glasses (wine glasses). Right now, both girls are sleeping, each have their feet on me. They are both are so sweet and beautiful, I am just too lucky to have these two cuties!
Tomorrow, we are picking Howard up at the airport and then heading to clinic. I don't think much will change until we find out the results of the EEG, but it is always nice to see Sue and Dr. K, they have a way of calming my wondering thoughts.
Saturday, September 4, 2004 8:36 PM CDT
Ashleigh has had a couple of tough days...she sleeps and then wakes up crying 5 minutes later. I spoke with Dr. Kurtzberg and she had us increase her Ativan at bedtime. She had a bit of a better today, a little fussy.
Her rash over her port is getting better.
We didn't access her port on Friday for her blood test. They wanted to give the skin some time to heal. They did a finger stick to check her blood counts. On Tuesday her hemoblobin was 8.1, below 8 we would have to transfuse for. Sue and Dr. K were hoping that her bone marrow would kick in and do it's job. Well it did, Friday's count was 10.6! Way to go, Ash!! Sue called with Ashleigh's appointments for next week. Tuesday we have our normal clinic visit. Wednesday morning, Ashleigh will be fitted for her AFO's and new stander. Then, in the afternoon she is going to have an EEG put on...it will stay on for 24-48 hours. Hopefully, this will tell us more about her seizures and how long we can expect to be here.
I talked to Sarah, Ashleigh's feeding therapist from home...she is coming for a visit in two weeks. As much as I love being at Duke, there are some people I miss, she is one of them.
We also had a nice surprise today, Fed Ex delivery...my sister sent down two packages of goodies. One for Ashleigh and Mackenzie, and one for me and Howard. It was a wonderful.
Good news for Jordan...they found what was causing his problems, he is doing better and scheduled to get his second transplant next week! Grow cells grow dance will be needed for this little guy! Last week I put the wrong web site up for him, it is: caringbridge.org/il/jordan
Alyssa is going great too...hopefully will be outpatient soon! caringbridge.org/ct/oursonryan
Thank you for all your prayers and support you have given us and all our little friends.
Friday, September 3, 2004 1:58 AM CDT
PLEASE PRAY FOR JORDAN...He is having a very difficult time, please keep him close to your thoughts. caringbridge.org/in/jordan
Ashleigh has been up and down the pass few days. I have been suctioning her and keeping her on the pulse-ox all day. Her O2 has been sitting between 92-94 percent. Her body temp has been jumping all over...requiring a blanket and then sweating.
I talked to Sue yesterday...we are using oxygen to help make Ashleigh comfortable and keeping a very close eye on her. We are starting therapy next week and waiting to hear about getting her AFO's made. We are going to do a blood draw later in the morning to check her hemoglobin...it has been hanging out, but very low. She may need a transfusion of red blood cells. She had one in July when she was inpatient at home. Before that her last one was in October. We are not sure why she is having trouble holding them now. Hopefully her bone marrow will kick in and she will make her hemoglobin. Ashleigh has the mystery rash all over her port. It started in July and has kind of comes and goes. It has gotten bad the last week. Dr. K gave us some medication to put on it, but it didn't work. It is the size of a tennis ball, some parts are dry and crusty, others are blistered and leaking a clear fluid. Okay, that was a little too much detail. Sue did have some good news...Ashleigh immune functions are normal...she needs to come off of the rest of transplant drugs and then we will start normal baby vaccines! She still is limited on where she can go until we get her shots!!! Within 6 months all restriction should be lifted!!!
We are hoping to have some answers to all of our questions next week. Disease and seizure questions...
Mackenzie has had a cough for a few weeks, only when she is playing or when she first wakes up. We are going to have her tested for asthma. I am not sure yet, it was just mentioned to us to have checked it. We are going to set up an appointment.
We are doing the grow cells grow dance for Alyssa Kristoff...her cells are coming in and she is going awesome! Go, sweetie pie!
Thank you for your continued support and prayers.
Wednesday, September 1, 2004 5:10 PM CDT
We arrived at Duke one month ago today...we came for Ashleigh's one year post transplant studies. We were scheduled to be here for a week. Her transplant anniversary was the 27th of August. We are still at Duke because of complications with Ashleigh's disease, damage the Krabbe had done to her brain before her transplant.
Her studies went well. Her blood is wonderful...for a transplant patient. Her enzyme is 5.9, that is higher than her donor. Her donor count is above 98 percent. I have not heard about her immune functions, I haven't asked.
Her vision has not changed, she did not behave for the eye doctor. Her hearing has improved again. Her nerve conduction shows some stable, some a little worse and some improvement. Ashleigh's lumbar puncture indicated that there was no build up of fluid on her brain and the protein is stable. Her MRI from this visit also did not show fluid. Her MRI from April did show some more mylin in the brain. EKG was normal, chest x-ray was normal, EEG was very abnormal...indicating the potential for seizures. Her appointment with Dr. Escolar went wonderful...Ashleigh did respond to her and tracked with her eyes...she gave some therapy recommendation...more aquatic and getting AFO's made and getting Ashleigh up standing in a stander. This will help her bones and her breathing. Dr. Escolar also thought Ashleigh was doing wonderful with the amount of drugs she is on and can't wait to see how great she will be after she comes off of them. She also recommended some new therapy toys and positions for Ashleigh. She recommended testing Ashleigh's bones for strength, that test really just confirmed what we knew, her bones are extremely thin and weak. Getting off of the steriods and in the stander wil really help her bones. Everything went well, so why are we still here???
Well Ashleigh does have alot of seizure activity and potential in her brain, without proper treatment it will cause farther damage to her brain. The neurologist at home did not agree with the medication that the doctors at Duke wanted to use, so we stayed to start this medication. Since being here Ashleigh has had alot of seizures and alot of other complications related to them.
While here we are also doing a push to get her off of the transplant drugs...FK506 will be gone in a couple of weeks, also the prednisone. Ashleigh is not able to make her own natural steriods so we did start her on hydrocortisone. This is a steriod but without the side effects, it will be gentle on her weak bones and not cause the puffiness. By coming off of FK and prednisone, she will also come off of Vfend, trimox, bactrim, and IVIG. The only drugs she will stay on are the vitamins to help her bones, regular vitamins, and her seizure medications. That will be wonderful...losing 6 medications.
We are planning on being here for a couple of months so they are setting up therapy for Ashleigh...need to keep her moving.
Mackenzie is having a great time playing with Katie (Ryan and Alyssa's big sister). They play everyday.
We are going to be getting an EEG that will stay on for 24-48 hours to see the activity in Ashleigh's brain, hopefully that will give us a better idea of what we are facing...if medications don't control the seizures, we may have to consider surgery. Please pray that it does not come to that!
We also celebrated Ashleigh's one year post transplant with other leukodystrophy families...they are wonderful, some we just met, some we have traveled this journey with...all are wonderful and supportive and most of all understand what we have been through and the hope our children have.
Speaking of HOPE, Jim and Jill Kelly are at the RNC in NY. All for a cause...to add to the HOPE our children have for a healthy future. Please ask your elected officials to support Senator Dodd and Congressman Rob Andrews bill for newborn screening.
Since being here we have lost two of our friends...Howard told you all about Daryn earning his wings. He transplanted a month before us, Daryn fought a hard battle with his mommy always be his side. On Friday, we also learned that Daniel lost his battle with cancer. He was a special little boy who loved visiting with Ashleigh in the clinic waiting room. Please say a prayer for these two special angels and their families.
Also, Jordan is in PICU here at Duke, he is having a real tough time so please remember him in your prayers.
Thank you
Friday, August 27, 2004 8:08 PM CDT
Tonight we had a wonderful dinner with all the Krabbe families. We have alot to celebrate today...Ashleigh is one year post transplant today. What a year it has been!! Ryan N. is going home. Best wishes go out to him. Alyssa and Josh have donor cells coming in...new life beginning. We released balloons to heaven for Daryn, we celebrated his life.
Ashleigh is doing well...we are going to be her for at least another month. Ashleigh is having alot of problems with seizures and we really need to get them under control with this new med. or we will have to go into surgery!
I will update about her one year studies soon. I am borrowing Bill's computer right now. Howard is going to look for a new one for us this week.
Thank you to all of you for the support and kindness that you have given to us this pass year. We took presents to the kids on 5200 and cake to the nurses in clinic and in the unit. They are so special and give so much to all of us.
Thank you.
Tuesday, August 24, 2004 10:55 AM CDT
In Loving memory of
Daryn Jackson
July 17, 2001 - August 22, 2004
Transplanted: July 9, 2003
We have lost another precious child to this horrible disease, Daryn Jackson passed away this morning (Sunday, August 22) around 4am. Please say and extra prayer for the family of Ashleigh's friend.
http://www2.caringbridge.org/mi/darynj
We thank you for your support but another family needs some support now.
I will update on Ashleigh at a later date.
God Bless you Daryn Fly sweet little Angel. We will miss you.
Love,
Howard, Michelle, Mackenzie, and Ashleigh
Thursday, August 12, 2004 4:13 PM CDT
Michelle is still at Duke and all is going well. In fact we have her enzyme results ( please sit down at this time) of 5.9. Is this awesome or what her level is higher than the donor. Her donor cells are GREATER than 98%. Michelle will update on the other labs soon. Michelle had to change apartments her new phone# is (919) 403-3170.
Thank you for all of your support
Howard
Monday, August 9, 2004 10:38 AM CDT
This is Sarah, Ashleigh's feeding therapist updating for Michelle because she does not have access to a computer. I am one the phone right now with Michelle as I write this. Ashleigh remains at DUKE and will stay for a couple of weeks because she is starting a new seizure medication, Zonogram. By using this medicine she will be able to stop 2 other meds. (Topomax and Keppra). All of her other test results have gone well....Michelle will update more later.
Thanks for your continued support for this special little girl.
Michelle can be reached at 919.419.0985
Saturday, July 31, 2004 8:37 PM CDT
All packed up and heading to Duke in the morning...!!!
Thursday, July 29, 2004 5:32 PM CDT
We are changing Ashleigh Ryann Gwin's name to Stinker Butt!
She had a wonderful Aqua therapy session. She really enjoyed the pool. I loved seeing her so relaxed. After the pool, she had a hour off and then headed for feeding therapy. SaraH worked so hard to get Ashleigh to eat. She wouldn't, she just fussed. SaraH kissed her, Ashleigh cried. It was sad, for both Ashleigh and SaraH. I think she really hurt Sarah's feelings. I do think it was the combination of the pool tiring her out and all her teeth coming in. She has 3 that cut through now. That is painful for a child to get one at a time, she has everyone coming in. So, anyway, we cut feeding therapy early and came home. She stayed awake the entire ride home from the hospital. I put her in her tumble form seat and she fell right to sleep. STINKER!
I tried to take pictures of Ashleigh in the pool today, but film in the camera usually works. Not my brightest moment.
With Ashleigh sleeping, I had some time to get some stuff done. I could have packed to go to Duke, cleaned this house or took a nap. Instead, I heard on the radio about a congressman supporting stem cell research so I looked him up and called his office. After telling HIM Ashleigh's story, the importance of stem cells for Ashleigh's future and about newborn screening, he agreed to contact our congressman who is working on a bill for newborn screening and get involved! How great is that?!
Ashleigh got a package in the mail today, her Godmother, Aunt Nicole, sent her a Halloween costume. Yes, halloween. JoJo the circus clown! I put the hat with the attached wig on her, how cute!!! I was so excited. Nicole is such a sweetie. There are not to many people like her. Just beautiful inside and out.
Well....I need to get moving a pack for Duke. I can't wait to get good test results and positive news, to see all the families, Dr. K and Sue. Soooo Excited.
Monday, July 26, 2004 12:22 AM CDT
Today, the phone rang and caller ID said it was Duke. I thought they were just calling to confirm appointments for next week. Well, I was wrong. It was Dr. K calling to tell me that Ashleigh's enzyme level was 4.3! She knew after the pass two weeks we needed some good news. She was funny, she said "I know you like hearing these numbers". How true, how well she knows us!!
Ashleigh has had a couple of seizures. She is not sleeping all the time but she isn't as active as she has been in the pass. She looks good, a little fussy, but that could be anything...the seizures to her teeth coming in. Yes, they are almost here, two back upper teeth and her front upper all have broken through. Her bottom from are close. Pretty soon she won't be able to suck on my gloved finger anymore, she will bite me.
We haven't gotten all of her therapy back yet, she will have developmental, feeding and aqua this week.
Everything else it going okay. Mackenzie is going to go to dance school in September, we are excited for her to get involved in something outside of the house. We picked the school, we have to register her and get her some dance outfits. Wednesday's are going to be Mackenzie and Mommy (sometimes Daddy) days.
6 days until we head for Duke. Even though it will be a busy week...the four of us will be together with the staff of Duke and other Krabbe families. How great!
Wednesday, July 21, 2004 7:45 PM CDT
WE ARE HOME!!!
Today Ashleigh was discharged from the hospital. She is on oxygen (blow-by) and a pulse ox. We also are watching her blood pressure and temperture.
We are not sure what caused most of the problems she had these pass two weeks. She has an ear infection. 1 percent sleep apnea, elevated kidney functions (caused by FK506), noisy brain waves. She went on with 15 medications and came out with 17. She had to start a new seizure medication called keppra (for seizures) and florinef (?) for high potassium. She is also having difficulties with urinating...she hardly goes. We are increasing her fluid intake for now. Her ultrasound did show normal structure and functions of her bladder and kidneys.
The staff at DuPont was wonderful. The nurses and doctors took alot of time to learn about Ashleigh, Krabbe and transplant. Her therapist worked her yet let her relax.
I am going to spend some time with Mackenzie...sometimes I worry that she is being left behind in all of this. She is a normal 4 year old..caring,loving, smart mouth and even bratty at times...how perfect. Those of you who know children know what I mean. She is taking these life changes so well, better than some adults.
Thank you for your prayers during these last two weeks, as always we could not have made it thought without your unconditional support, love and prayers. Thank you so much.
Tuesday, July 20, 2004 7:55 PM CDT
I don't know where to really start so I might jump around a little.
EEG did not show any active seizures...just potential, which we already knew.
Sleep study did show some apnea, however it was very low just 1 percent.
Ear did test positive for an infection...yes the same one that we have been battling since April.
All blood, urine and stool cultures have been negative.
We were set to get discharged yesterday...packed up and heading for the door when a blood test came back showing a problem with her kidneys. We have to stay for a little while longer. Her kidneys are working too hard and not putting out enough urine. We started her on one medication that did not work so we did another today and now her levels are too low. In a couple of days we should have it figured out. She also had a ultra sound of her bladder and kidneys today. Still waiting for the results.
Not much more to report.
I do feel better about how she is doing and we do not feel as desperate as we did last week.
Everyone has been wonderful, the doctors, nurses and therapist.
i will update as we know something. We are also scheduled to be at Duke the first of August.
Thank you.
Saturday, July 17, 2004 8:31 PM CDT
Ashleigh has had a pretty stable day. She has had oxygen blown on her several times to help with her saturations but she has been awake a bit and even smiled a little this morning. Most of the afternoon she has slept.
We had to de-access her port because of a strange red, raised rash around it. She had a slight temp, it went away on it's own.
The first report came in from her EEG...alot of "noise" in the backround, with the potential for seizures but no active seizing. There is no signs of brain stem involvement.
We are going to be in here until at least Tuesday, when the rest of her test results are expected in.
No more mention of the spinal tap, at least not until Monday.
Alot of blame on disease right now...we are blocking out the people who read the disciption of Krabbe and say all of this is disease.
On Tuesday and Wednesday last week, Ashleigh was great. Looking around, playing with us. Suddenly on Thursday she was having all of these problems.
Our trust is in Dr. Renwick, Sue and Dr. K.
We still have alot of HOPE that Ashleigh will fight and we will fight for her. If she tells us she is ready to fly, we will hold our baby girl and tell her how very loved she is as she peacfully earns her wings and flies home to be with God and all the other special angels.
Please continue sending the prayers...
Thank you so much.
Friday, July 16, 2004 3:25 PM CDT
I am not really sure where to begin...
Ashleigh is on a 48 hour EEG (brainwaves)...the first neurologist thought she was having constant seizures and she had disease progression with brain stem involvment. The second said...there is potential for seizures (spikes) but not active seizures. "Alot of backround noise". He also said that her brain stem is involved.
Someone during the day, I don't really remember who asked us about a DNR...NO way. She will let us know when she has had enough. She is not on a ventilator, sometimes she gets some oxygen blown on her face.
She is also getting a sleep study.
They have talked about a lumbar pucture to look for viruses in the Central Nervous System.
Dr. K does not agree with the brain stem...all of Ashleigh's MRI's that have been done shows the disease stable including the one in April.
If this was something that was disease related...it wouldn't just happen overnight...it would be slow. Right?
She has become none responsive several times for several hours. Her heart is still all over the place. Her body temp is normal for her (96).
They had to stop the Zonegran because of drug reaction rash. They started her on Kepra (don't know of spelling). If anyone knows about this drug let me know, Please.
She is very unstable. We still know nothing. Sadly, we are hoping for a virus. I know that sounds horrible...but disease would be worse.
Please keep her in your prayers.
Jason...thank you for signing in...and all you are doing in Iraq. Tell the guys we say hi and we are thinking of you all.
Friday, July 16, 2004 3:25 PM CDT
I am not really sure where to begin...
Ashleigh is on a 48 hour EEG (brainwaves)...the first neurologist thought she was having constant seizures and she had disease progression with brain stem involvment. The second said...there is potential for seizures (spikes) but not active seizures. "Alot of backround noise". He also said that her brain stem is involved.
Someone during the day, I don't really remember who asked us about a DNR...NO way. She will let us know when she has had enough. She is not on a ventilator, sometimes she gets some oxygen blown on her face.
She is also getting a sleep study.
They have talked about a lumbar pucture to look for viruses in the Central Nervous System.
Dr. K does not agree with the brain stem...all of Ashleigh's MRI's that have been done shows the disease stable including the one in April.
If this was something that was disease related...it wouldn't just happen overnight...it would be slow. Right?
She has become none responsive several times for several hours. Her heart is still all over the place. Her body temp is normal for her (96).
They had to stop the Zonegran because of drug reaction rash. They started her on Kepra (don't know of spelling). If anyone knows about this drug let me know, Please.
She is very unstable. We still know nothing. Sadly, we are hoping for a virus. I know that sounds horrible...but disease would be worse.
Please keep her in your prayers.
Jason...thank you for signing in...and all you are doing in Iraq. Tell the guys we say hi and we are thinking of you all.
Wednesday, July 14, 2004 6:22 PM CDT
Well...yesterday we were discharged from PICU...today we were readmitted. Late last night Ashleigh had a seizure and again this morning...her oxygen and heart rate were all over the place. Her blood pressure was only 80/54.
After a brief visit in the ER, we were readmitted.
I will keep you all updated...please continue the prayers.
Thank you
Monday, July 12, 2004 4:03 PM CDT
ASHLEIGH IS OFF OF THE VENTILATOR!!
9:00 this morning the therapist came in and turned the rate off on the ventilator, to see if Ashleigh would breath on her own. She did.
At 11:00 they took the tubes out. She is doing well. Making alot of grouning noises and letting us know that she can still yell at us.
She is getting a red blood cell transfusion...her first since September. We are a little concerned about why now...after so long. No one can say.
We don't know what caused this and we may never...for now we hold our breathe to see what tomarrow brings.
Please continue to say the extra prayers...sending HOPE.
Thank you!
Sunday, July 11, 2004 1:53 PM CDT
Yesterday morning as they were getting ready to remove the tube from Ashleigh...she crashed. Her heart rate dropped to the 40's and she had 6 seizures in a row. Her heart rate has been unstable and they are still unable to find the cause. For those of you who are experienced in PICU and ventilators...her setting are low 25xygen, rate of only 6. Dr. K thinks it is Krabbe related. The neurogist here thinks it is secondary to something else. All cultures are still negative. She is awake at times looking around. She is not on anything to make her sleep. She is getting extra Ativan when she has seizures. She started a new seizure medication called zonegran (spelling might be off), we will wean her off of topamax in 2-3 weeks.
Things are still very unstable and we are not sure why or what to do. The doctors and nurses are great with Ashleigh and working with Duke. Howard gave a few of you the wrong number...it is 302-651-5481 or 302-651-4000 is the main hospital number. Thank you for the prayers but please, please continue...
things just don't look that good right now.
Friday, July 9, 2004 8:08 PM CDT
Okay...so far no clues to what happened.
They are planning on removing Ashleigh from the ventilator in the morning...her setting now are very low. She is doing great. Looks wonderful considering she has a tube in her mouth. She did break out with some Graft vs. Host today. We expected it, stress causes it. We are not able to treat it with Solumedrol because of her heart rate being so crazy.
Yesterday her heart rate was 60 to 160...even hitting 300 a couple of times. Her oxygen was doing the same 100, then dropping to 40. Howard and I both thought she was going to die.
Her EEG today did not show any seizure activity. Her lungs are clearing up...which means it was not aspiration. Her blood pressure was very low, the doctors forced fluid into her veins very fast to bring it back up. However, that caused her vessels to leak and her lungs to fill up. This is all under control now.
All her cultures are still negative, no viral or bacterial infections have grown. Her CT was clear, not blood or fluid on the brain.
So...we have no answers. Most likely we will not...until next time this happens, and we start this process all over. She is doing better and we hope to be home sometime next week. We are thankful for the wonderful job our doctors did, the ER was wonderful...PICU nurses are great. Sarah and Dr. Renwick come to see Ashleigh often.
Last night, everything happened so fast that we almost didn't let them put her on the ventilator, thank God we did. It was hard to watch them putting the tube in, but harder to let go. Maybe it is selfish, but she will let us know when she is tired and ready to fly.
Thank you for your support and prayers...we are so grateful.
Friday, July 9, 2004 9:50 AM CDT
Yesterday morning Ashleigh would not wake up...we tried for about a hour, hooked her up on her pulse-ox, called Duke, called duPont...ended up in the ER. She had a CAT scan, blood drawn, cultures taken...after about 10 hours, she crashed in the ER...she is now in PICU on a ventilator. We are not sure what caused it yet. They are looking for seizures, infections and so on...we hope to hear more soon. Her settings are low, and they are already starting to wean her off of the ventilator...please just pray for Ashleigh as she travels this oh so bumpy road.
I will update as we know something...
Thank you
Sunday, July 4, 2004 3:40 PM CDT
Well...vacation did not work out. Not because of Ash...just others!
We increased Ashleigh's baclofen to help with the retching and it really has made a difference. I was not happy about doing it, but if it makes her more comfortable. Ashleigh is doing great. Yesterday, the four of us went out and had a very special guess with us...Sarah, Ashleigh's feeding therapist came over, we went to the aquarium, shopping, dinner and water ice. It was great. I think we might be doing a "trip" to Duke. Just to see some "family". Today we are celebrating out great nation with friends, one of which is preparing to deploy to Iraq. I am so glad we are here, so is Howard.
Our computers at home are not working, so I can only check my email and this site when I am at friends.
Michael...you are in my thoughts.
Thank you to all of our Military for the great job they do, and the freedom they give. God Bless each of you...
Saturday, June 26, 2004 10:25 AM CDT
Thursday was...well interesting.
Ashleigh started her day at 8 am with Physical and Visual therapies. She did well, was a bit lazy, but didn't cry. She then had feeding therapy, she ate alot...apple/sweet potatoes. Yummm! Aqua therapy wasn't set up, so she didn't have it. Dr. Renwick appointment went well. No new issues.
ENT was a mess...they were hours behind schedule, no waiting place for Ashleigh to be isolated so we left. We went back to see Dr. Renwick and she said that was fine. No problems with blood, no rash, everything is good...
Now we are heading to the beach...be back in two weeks.
Wednesday, June 23, 2004 7:46 AM CDT
NEW PICTURES!!! YES, FINALLY!
Yesterday, Ashleigh blood results came in...her counts are back up and look great! WBC, Hemoglobin and Platlets all went back up. No transfusions or GCSF!!
However...we know little Miss Ash likes to keep us on our toes...her creatinine(kidney functions) are high, again! After talking with Duke, we have lowered her FK506. She was taking 2 drugs that are very hard on the kidneys. One, Acyclovir, we took away last time her creatinine was high. The FK506 is very important to control Graft vs. Host Disease. We complete took one dose away, cutting her intake in half. If she does have a break through GvHD rash we will try to control it with Protopic cream. We should be taken the FK506 away soon anyway, so hopefully she can handle it. If she can be taken off of the FK, than we will also be able to take alot of her other medications away. The FK supresses the immune system, Ashleigh takes other drugs to help protect her from various types of infections. We will be able to take away, IVIG, Bactrim, and Trimox...only if she tolerates the weaning of FK506! So this is kind of bitter sweet, her kidneys are working to hard, however it is controlable with lower the medciations, which helps take away other medications. I know, it can go on forever and as great as it would be to get the meds taken away, I don't want her kidneys to work too much. Okay...I am talking in cirles!
All her other blood results were great.
We cancelled therapy yesterday...her PT, Debbie has poison ivy still and her ST, Jen is on vacation.
Today...we have DI (developmental intervention) and OT. The nurses that will be working with us and caring for Ashleigh are coming out to meet us and learn about Ashleigh. We are very excited to meet them, yet nervous to have people in our home all the time. It will be better for Ashleigh and Mackenzie.
3 more days until we hit the beach!!! Mackenzie is so excited, she has this countdown going on. I on the other hand, really just need to pack. I have nothing packed except toys for Mackenzie and some of Ashleigh's basic need stuff (diapers, wipes, mask and so on) I am usually a planner, Ashleigh taught me...you can't plan for everything.
Dr. K asked if she could us Ashleigh's journal entries from April 29th and June 13th for her staff at Duke to have an insight on the experience that we face as parents. Of course I said yes...anything to help Dr. K and her staff. We are also talking with her about farther treatments for Ashleigh that may become available.
Thank you to all
Monday, June 21, 2004 5:41 PM CDT
Sorry, I didn't update over the weekend. We had a wonderful time as a family. The 4 of us together!
Ashleigh had a hard day. She has been fussing most of the day, even thought therapy. She just doesn't seem right. She is still having feeding difficulties, her reflux is giving her a hard time. We did a blood draw, the results should be in soon. Hopefully her cell counts go up. I will update more later...sorry she is really fussing and demanding a little extra snuggle time tonight. Thank you.
I have known for about 4 plus years that Howard was a wonderful daddy. This year, has been so hard, yet Howard has handled it so great. He works with Ashleigh, plays with Mackenzie and I must say...from where I stand...the greatest daddy! Happy Belated Fathers Day, honey, you are wonderful!! Thank you for all you do!
Friday, June 18, 2004 2:00 PM CDT
Ashleigh had a very busy week...
Monday Ashleigh had her blood drawn, PT and OT. She did so wonderful in her therapies, sitting up activating switches and rolling from her side to her back.
Tuesday she had PT, again, she was amazing. Working hard and sitting up, lifting her head and moving around.
Wednesday she had OT, busy, busy...activating the switch toy. Two times in a row she lifted her hand and hit the switch to turn on a bubbling fish tank.
Thurday...feeding therapy and doctor appointment. Aquatic therapy was cancelled while we try to work out a schedule for the pool.
Today, we switched her developmental therapy to Monday, so the PT and DT can work together. The PT, Debbie came today, but she didn't work Ashleigh because she has poison ivy.
Blood work...
Ashleigh's new donor test came back, her last one came back at 91 %, the new one is back up to 98 %!!! We were very happy.
Her labs from Monday did show that her creatinine (kidney function) is high but stable. Her hemoglobin and white count both dropped really low, not enough for transfusions or GCSF but the lowest they have been in 6 months. I was concerned but we are going to repeat the test on Monday.
Issues...
Yesterday, Ashleigh had some very watery diapers. We were concerned because of the counts dropping. It could be a sign of a virus. We thought we could watch it for a day, it has now cleared up and things are back to normal.
Ashleigh is also having alot of retching...this time it is 2 hours after she eats, not during the feed. I talked to Sue and we are increasing her reflux medication to see if that helps.
She has a spot near her under arm that started out as GvHD and cracked. It is a little sore and red, we are treating it with bacroban.
Her seizures are continueing to break through, we are waiting for her Topamax level to come back and we may have to increase it. For now we are just treating the increase seizures with Ativan.
Ashleigh has had some increased irribility, Howard was trying to find out what was causing it when he spotted her mouth. All her gums are white and her teeth are again trying to break though. Normal, everyday baby issues...we can handle that!
Our nurses are coming out next week, but they are not going to start until after they are not going to start until we come back from vacation.
We are going to the beach with Howard's mom and some other relatives will be in and out over the two weeks. I have sent a million questions to Duke about what Ashleigh can do, where she can go and skipping appointments...I am so nervous to make any changes, but we are not far from home and still have access to our doctors.
Promise to update pictures soon and not to go so long without a update...
Sunday, June 13, 2004 8:25 AM CDT
Today is the day...one year ago, today...we were told our baby girl was going to die. We sat at a oval table listening to different doctors give us advice. One telling us about transplant and Dr. Kurtzberg, another saying we owe it to Ashleigh and ourselves to explore the option that Duke has to offer. Then one saying no, transplant is not successful...no medications were needed...see her in 4 months. Knowing that in 4 months she could be gone, knowing she was stiff and crying.
Today was the day I sat in front of a team of doctors saying no...Ashleigh was not going to be a lab rat, not an experiment. I thank God, that my opinion changed when we talked to Duke.
Today is the day that our lives where changed forever. I thank Ashleigh for some of those changes. She made us appreciate life more, take more time for our children, and love our family more. She made us see God differently, she made us see disabled people different, she opened our eyes to a beautiful world...full of rainbows, sunsets and life. She was sent to rescue us, and that she has done!
This day is hard, not all of these changes are wonderful. Ashleigh has suffered so much. This pass month...remembering the first hospitalization, the first MRI, first lumbar punture and the countless needles for blood. I thought maybe after we got to this day it would get easier, but then there is July 22, she had her G-tube place, I stopped holding her to feed her a bottle, she stopped smiling for 9 months. Or August 17, her first dose of Chemotherapy. These dates will lead to celebration...we just need to get pass these next few "anniversaries". We will come to dates like...August 27th, transplant day, September 4th engraftement day, September 24 dischanged from the hopsital, December...remylenation, April...smile returns and improved test results.
We have not celebrated the first tooth, the first steps or the first words. I have not heard the simple word "mommy" or "dada", but I have life to celebrate. I do celebrate the transplant day, engraftement day, remylenation and so on...they are the dates of acheivement that Ashleigh has made. One day we will have the first tooth, we WILL have the first words and with future science help...we WILL have her first step. I know in my heart that these days will come.
But today...we mourn the loss of that dream that we had for Ashleigh...
Friday, June 11, 2004 10:25 PM CDT
Ashleigh had a wonderful feeding session on Thursday, she ate a 1/2 of container of vanilla pudding. That is the most she has eaten so far! Next week we are going to try the cheesecake cups. Yumm! We had lunch with Sara (therapist) and then headed over to get a evaluation for Aqua therapy. Dan did about a 1/2 hour exam and then we took her to the pool. Well...Ashleigh did great. She didn't cry (I was afraid of her crying because she never liked the water before transplant). She moved a little. Dan thought that she would benefit from it and we are going to have a weekly session on Thursday. Dr. Renwick was on vacation so we saw Dr. Aloft. We went over the events from earlier in the week and we headed home. It was about a 6 hour, busy day!
Ashleigh had developmental therapy today...she continues to respond to switch toys and lights. Today she was activating a switch to listen to a story. Later she had physical therapy. She was not happy but she worked. Debbie had her on her hands and knees. Ashleigh was so mad but it made her work. She would push to get out of that position but end up using her legs and arms. It was wonderful to see her fight so hard and have the strength and muscle control. Of course, she slept most of the rest of the day!
I am sure most of you have heard of the 4 New Jersey Army National Guardsmen that were killed in Iraq...please say a prayer for their families and for our troops who so bravely serve.
Good-night.
Wednesday, June 9, 2004 10:54 AM CDT
Ashleigh has had a tough couple of days...
Monday she had her monthly dose of IVIG, while the nurse was setting up Ashleigh started to have seizures. I called Duke and we gave her an extra dose of Ativan. Her infusion went well, no reactions. Well, not during the infusion. At 7:30, Howard noticed she was red and had a fever. I called Duke again, we gave her Benedryl and put her on Pulse-ox. If she did not respond then we were going to the E.R. Well, it took about a hour and she was better.
Tuesday night...she was have problems handling her saliva, we had to suction her several times.
She is having alot of body temperture difficulties. She is sticky and uncomfortable. Fussing on and off.
Yesterday, she saw a ENT doctor for her right ear infection/growth. I say growth because it is just growing out of her ear. Well...we didn't get too far with the doctor. He thought that it is secondary to the skin rash, but that is Graft vs. Host Disease. Duke said that GvH does not causing smelly, leaky fluid to come from the ear. ENT did draw cultures and we are waiting for them to come back in a couple of days. He referred us to a Dermatologist, but we declined.
We also declined a MRI, it is not going to show what is happening with seizure activity. She would need a EEG for that. The doc wanted to have a MRI so he could see the damage done to her brain, he can get the films from Duke. I don't want her to have a extra MRI, plus the hospital here will sedate her for it, we don't do that.
We did have lunch with Sara yesterday while we were at the hospital, Sara is Ashleigh's awesome feeding therapist.
Ashleigh had PT this morning, she did well, she rolled off of her side, responded to my voice and was doing a little reaching. A great job as usual for my little girl. Her therapist, Kate was proud of her.
We will see Sara tomarrow for feeding, then we will have lunch again with her. We then have a consult to start aqua therapy and a doctor appointment, to do a physical exam and go over lab results.
Busy, Busy, Busy...
Today we heard that after 4 months of fighting the insurance company, we have a nurse! Yes, they finally approved it. This is very exciting. I get some sleep, Ashleigh gets more care.
Thank you for everything...your support, love and prayers. You are all a huge part of Ashleigh's care and recovery.
Thank you.
Friday, June 4, 2004 11:57 PM CDT
Ashleigh had alot of theray today...her day started with developmental therapy. She also brought an occupational therapist with her. They ganged up on Ashleigh and worked with switch toys. Ashleigh did well, they saw alot of interaction and they felt that Ashleigh was making movements to turn the switch toys on, including turning a music tape on.
She also had Physical therapy, Debbie pushes Ashleigh. She had her sitting up with little to no support and she had her moving and using head control. It is great to see. During her session...Ashleigh was sitting up with just one arm being held, Mackenzie stood to Ashleigh left and started to sing a song, Ashleigh lifted her head and completely turned it to the left. Debbie felt she was doing this on purpose because Ashleigh favors her right side, so she turned her head to the opposite side that she prefer.
Of course, Ashleigh was so tired afterward, she slept a great bit and is not awake at 1:15 am!
Thursday, June 3, 2004 6:15 PM CDT
Ashleigh started out her day with feeding therapy...chocolate pudding! Yumm! She also tried some lime tortilla chips and chocolate graham crackers. She had a awesome session. Her therapist,Sara, thinks that today was the best day she has seen...I think it is the chocolate, after all she is my daughter.
We also saw Dr. Renwick, she ordered a blood test for Monday that will tell how fast her red blood cells are growing. She is concerned about the drop in Red and White blood cells. They are really bad, just lower than were she has been. We are also keeping a close eye on her because she is being fussy and she is having a little trouble with her oxygen again.
I met Dr. Renwick's associate today, she will not be in next week so she wanted me to meet him. He seems nice.
Today Sara gave me a card and I thought the words were so sweet, I thought I would share it with you...
"If you ever need a hand or an ear to listen, I've got two of each." "If you ever need a smile to encourage you, I've got one of those (and it's a big one)." "And if you ever forget how uch strength you have inside, I'm here to remind you." "In fact, if you need anything at all, I've got all the time in the world for you."
How sweet is she...I can not tell you how caring she is. She is absolutely awesome with Ashleigh and a wonderful friend to me. Thank you, Sara!
Wednesday, June 2, 2004 7:38 PM CDT
Second update for today...I talked to Sue @ Duke and she said that Ashleigh's immune study came back a little odd. She is waiting to talk with Dr. K about it but it came back very low. She does not believe it is a true reading. Dr. K is out of town right now so...we hope to hear from her soon.
Ashleigh had a great day, she did great in therapy.
She is having feeding therapy in the morning...more chocolate pudding, lime tortilla chips and chocolate graham cracker are on the menu. We also are going to see Dr. Renwick and one of her assciates. Sue also thought that it is time for us to take Ashleigh to an ENT, for the ear infection. I will talk to Dr. Renwick about getting an appointment.
Good night
Wednesday, June 2, 2004 10:58 AM CDT
Ashleigh has been doing better. She had physical therapy yesterday, she did great. Debbie (PT) has her supported in a sitting position and was massaging her back, Ashleigh lifted her head 3 or 4 times in a row. She also was in a crawling position for a while and again responded very well. She responded to voices and interacts with us so well.
Today we have therapy, OT and PT. We were suppose to have a nurse come in to do blood draws and give Ashleigh IVIG but they are having trouble getting IVIG so it was moved to Monday. They talked to Duke and they are also having trouble getting the type that Ashleigh uses. When the nurse comes out on Monday, she is going to draw blood for her normal labs and also send a enzyme level to Dr. Wenger (Jefferson) and a donor cell cout to Dr. Kurtzberg's lab at Duke. These test came back a little low when we were at Duke in April, so they wanted to wait a little and repeat them.
Everything else is going the same.
Sunday, May 30, 2004 7:41 PM CDT
Ashleigh thought it would be nice to keep me on my toes, again.
Early this morning, 2 am, Ashleigh woke crying. She started to have trouble with her secreations. I got some supplies together and brought Ashleigh into my room. I wiped her mouth with a rag and there was a bit of blood. I started to panic a little but as I continued to clear her out, there wasn't anymore blood. I am not sure what caused her to have it. She went back to sleep and was fine. I, on the other hand, watched her most of the night. She wears a pulse-ox that alarms if she doesn't have enough oxygen or her heart rate drops down to low but I was still nervous.
Well, she didn't think that was enough so she misbehaved a little more today. Her diaper had a little blood also, she has done this on and off since chemo. Ashleigh has some sores outside her rectum that causes her to bleed sometimes. The rest of her diapers were clear today. Just one, you know, keeping me on my toes.
After her bath this morning, I was cleaning her right ear before putting drops in it. She still has the fungus infection that leaks puss. Well, guess what, yes, blood! I did this one, I accidently scratched her ear. But, my heart sank when I saw it.
She did well the rest of the day, she smiled once this afternoon. She stretched a little but we kept her day relaxed. She has a busy schedule during the week so we just wanted her to have the day off.
Please remember the true meaning of Memorial Day, it is not to kick off our summer, it is to remember the men and women who keep us free. Please remember our military who are fighting today, those who have served, and to those who have died for our flag, our freedoms and our lives.
I can't really explain what is going on with me. I know things are not right. I have been trying to help a family of a baby who was just diagnosed. They found out Friday that she is too far progressed and Dr. K thinks she has about 2 months. The same time that this family is getting this news, another family has decided to stop feeding their child. I am completely torn apart by this. They are seeing their child suffer from this disease and they feel that starving him is a better answer. What is happening to our children? Why is this an option in our world? The family feels putting in a feeding tube is life support. I see so many people, family and friends, who disagreed with us transplanting Ashleigh, no, they don't say it directly but the comments, lack of interest or the way the pretend that everything is just as it was a year ago, talk about life, life does go on as normal for them. Even though life is in our home, life is moving on for us, it is forever changed. These people do not live in our world, they do not understand this, nor will they ever. I need to accept that. I fought for her and I will do this all over again. She deserves that. If we went to Dr. K and she felt that transplant was not an option for Ashleigh than we would have brought her home, loved her, cherished her and made sure she was comfortable until she was called by God's angels. Dr. K gave us the option to transplant and for us we could not bring Ashleigh home to die. We had to hold onto the Hope that Dr. K was able to give us. When we were at the symposium, we met with 60 families, maybe 10-15 still had their children. The rest of these families have buried their babies. The rest of these family have pain in their hearts that I hope I never feel. How I feel is trival to what they feel. I can't stop thinking of them, these faces of children who have died. The pain and emptiness that is left behind.
I am watching the movie the Hours, in it Nicole Kidman says that someone must die so the rest of us will value life more. It's contrast.
This time last year we were still in patient at duPont, we still didn't have a diagnoses. We were still blind to what was still about to hit us. Today, we are way to aware of this disease, this pain and yet this hope that stands before us. Good night.
Saturday, May 29, 2004 5:18 PM CDT
Ashleigh had a great Physical therapy session yesterday. It was the first time that we saw Debbie (therapist) since we came back from our unscheduled visit to Duke. She thought that Ashleigh was a completely different child. She thought that her skin, her "glow", her awareness, her interaction with us, everything was better. She was so excited to see how well Ashleigh was doing. The rest of the day we worked in the yard and relaxed. We put a pond in...we thought Mackenzie would get a kick out of having fish and Ashleigh would enjoy the sound of the water. Plus, with Ashleigh's crazy schedule, going places during the week will be impossible. Maybe on weekends we will be able to take a day trip or something. Of course we can't go to places where there will be a crowd or that Ashleigh could be exposed to something. She is still not allowed in the ocean or lakes. We are allowed to take her in pools now so that will be exciting.
Today we did the same thing, cleaned up a little, sat outside by the pond. Ashleigh did get a little workout by me and she had chocolate pudding...she loved it. I just figured a healthy 18 month old would love chocolate so I gave her a little. She kept looking for me. I can't wait to take some with us on Thursday for feeding therapy. Sarah will be so excited to see her move her mouth and swallow so well. Well that is about all we are up to, nothing to exciting. I am going to snuggle in with my girls and watch Snow White.
There is a family who was down at Duke with their 4 month old being tested to see if she could recieve a transplant for Krabbe. I have been talking with her family, trying to offer support and answer some questions that they had. Yesterday, Dr. Kurtzberg told them that their beautiful baby could not have a transplant, her disease was too far progressed. Please send them the same support you have always shown us.
caringbridge.org/ms/candaceangel
Thank you.
Thursday, May 27, 2004 5:30 PM CDT
This is my second time trying to update, my last one I hit the wrong button.
There is alot to fill you in on...
Well we will start with today. The nurse came out to draw blood, he was fast, in and out in half hour. Ashleigh then had feeding therapy. She gave Sarah some attitude, a few times she tried to spit food on her but Sarah held her own. Ashleigh just hears Sarah's voice and starts to mover her mouth. At one point we were washing out Ashleigh's bowl/spoons and cleaning up when Ashleigh was awake looking around, we went back over to her and she hurried up and closed her eyes. Stinker! We then had lunch with Sarah. Afterwards, we had an appointment with Dr. Renwick. A regular exam, something we haven't had in a while. Ashleigh's ear looks better. She responded to the light. Her lungs are clear. She is in the 25 percentile for weight, 5 percentile for height, and 90 percentile for head circumfernce. We got a few prescriptions refilled and headed home. Ashleigh had a wonderful day.
Yesterday, Ashleigh had a developmental therapist come out. She was very impressed with the way Ashleigh interacted with us. She saw Ashleigh track objects, make eye contact, turn to a voice. The best was that she saw Ashleigh make discissions. She put a "gooseneck" switch next to Ashleigh's head, Ashleigh would turn her head and hit the switch turning on a toy that had my voice taped on it. She did this several times. She also gave her a vibrating toy, Ashleigh did not like it. While the "gooseneck" was still next to her right side, the therapist put another switch on the other side, Ashleigh would do both of them, she would turn her head to one side a few times, then the other side a couple of times. The therapist thought she was doing this intentional. Yes, my girl is amazing!
We were suppose to start Aqua Therapy, but...our insurance company likes to give us a hard time. They wouldn't give us a nurse. Then, I threatened them with going to the newspapers. They went to my husband's employer who said, yes give her a nurse. (Does anyone see anything wrong with this. Yes, his company has been great, but should they be making discission about what care Ashleigh should get?) So, now the doctors once again need to say why it is medically needed. Keep in mind they have been requesting a nurse since January and the insurance company sent someone out to see if Ashleigh could use a nurses aid and they sent a report saying that the aid would not help Ashleigh because her care is too involved. The insurance company ignored that report, ignored the doctors, got "permission" from the employer and still will not give us one! They make me want to scream.
There is too much to celebrate with Ashleigh to get upset about that kind of stuff. She is going to show everyone how amazing she is.
Mackenzie is sitting on the couch with Ashleigh's head on her lap, she just leaned over and told her baby sister that she loves her. They are watching Springtime with Roo, life is great, life is beautiful and we are all so blessed.
Thank you.
Tuesday, May 25, 2004 5:27 PM CDT
Ashleigh is doing better, she had a bit of a difficult time at the symposium, but now that we are home she is okay. I was afraid she was crying because of new fractures but it was only because of all the people and noise. We are going to start Aqua Therapy...I am really looking forward to this. I am excited about getting Ashleigh in the water. She never liked it before so I am hoping she will now. She does better in her bath then she did before transplant. We are also going to start using the stander. The stander has some history, it use to belong to Angel LeA, and was also used by Angel Anthony. We feel very lucky to be able to use it for Ashleigh. Thank you Micki.
I wanted to share something with you all.
At the symposium we heard so many stories, too many children are misdiagnosed with this disease. Which is even another reason for newborn screening. There is a huge story to be told about this disease. A story of children who battle the monster and are called to God, like David, LeA, Anthony, and Haley, to the children who are like Ashleigh, Dylan and Ryan who recieved a transplant but have alot of damage. Then of course, the newborn transplants like Degan, Dalton, and Laura. They are all so special. I think somewhere it is forgotten that they were able to be transplanted because they had a sibling fight. Not by their parents but by the news, Senate, Congress. Their parents suffer for the lost of the death child and celebrate the life of the transplanted child. I can not imagine their hearts, the emptiness, the fullness.
I don't think that Ashleigh's story is any less important then a newborn transplant child. There are many happy people who don't have all their stills, whether they are blind, deaf or don't have the use of limbs. They have love and happiness. Did I feel judged, not really, maybe by some...most were supportive, well all but a few. I had a father tell me he wouldn't have transplanted Ashleigh, but he also said that he was not in our shoes and did not feel judgement toward us. A mother, whose son died, said she would have done anything for it to be an option for her son.
When we were trying to decide whether we should transplant or not, Howard's mother said that if it was us, we would naturally fight for our lives. Dr. Kurtzberg gave Ashleigh a 40 hance to survive the transplant, Krabbe was giving her 0 hance to live. For us, we could not take Ashleigh home to were there was no hope. I have talked several times about hope...it is truly what we hold on to. Maybe we are fooling ourselves but we believe that some scientist will come up with something that will better improve Ashleigh life. Our we foolish, maybe, but we have HOPE. It is a simple four letter word that I hold on to with all my heart.
When my mother buried my brother, she told us that God puts us on this earth and He will take us off when he is ready to call us "home". It did not matter if we were watching TV or jumping out of airplanes. God has a plan. So...if God is ready to call Ashleigh, He will, with open arms recieve my baby girl. But for me, while I am lucky enough to have her, I will do everything I can to improve her life. Noah and Leandra taught me that, they transplanted but was still called "home" by God. They are special angels who touched my heart.
My sweet baby girl, is no more special then any other, but no less either. Sure she is more to me, but that is natural. We all want more for our children whether they are sick or healthy, we want what is best for our children. I felt by transplanting Ashleigh I did what was best for her.
Okay, I have rambled on enough. I have one last request. When Ashleigh was being diagnosed, she had a special room
mate named Billy. His family didn't come visit, he was being raised by the nurses and therapist on the unit. He has spent most of his life there. Tonight, Billy is holding on but his little body is tired. Please say a prayer for Billy and the "family" that has come to love him so. God Bless you, little Billy. We love you.
Sunday, May 23, 2004 8:41 PM CDT
We are home! We all had such a wonderful time at the symposium. I loved being with all of our extended families. We met so many families that I spoke with through email or on the message board and it was so exciting to put a face with some of our special friends.
They (Hunters Hope) kept us very busy, we met with 12 doctors, had mom/dad sessions, family sessions, ate a whole lot of food, went swimming, listened to guess speakers, was interviewed by the news...but most important spent time with wonderful people.
Mackenzie went to daycare and made new friends. She entertained with her singing.
Ashleigh had a little bit of a rough time, she fussed a whole lot. I called Dr. K (she couldn't make it because of weather) and Sue, we increased her Ativan and we are going to watch her for a few days. We think it might be that all the excitment, people, noises and lights were just too much for her. We are going to also call Dr. Renwick about a x-ray to rule out any new stress fractures.
Howard went to dinner at Jim's cabin with a bunch of other families and was riding wheelers, he was muddy...of couse he had a ball!
I talked to the families, I love hearing their stories and sharing ours.
It is hard to explain how close I feel with these families. I sat on the floor today and talked to Michelle Robinson for a while. She was full of information and was so supportive of us.
One night I sat and talked to Terry Hammonds, what an awesome pair her and her husband are. They are just wonderful.
Then, I talked to Erica and Greg Sears, Terry, and Grace Caruso with her son, Anthony. I met Greg and Erica down at Duke once when they came to meet the transplant families that were there. Well Erica, I just must say she is a sweetie, a bit crazy, but sweet! What a blast that night was.
Poor, Kelly, we tortured her...she was driving the golf cart and the back wheel fell down off of the curb, her friend, Terry is trying to lift it back up and me and Erica take pictures. Erica made a fake news artical up and acted like Kelly rolled the cart down a hill and injured kids...she was later arrested and we took mug shots of her...it was so funny, a great joke to do to someone as sweet and kind as Kelly.
I was lucky enough to meet Chance and his families, Matthew Shilling and his family, the Kelly family, Elijah was there with his mom...Mackenzie and Elijah are buddies. We also talked with Taylor and mom and grandmom...there was a new grandmom there who needs prayer for her pregnant daughter. Mikey, who lives 10 minutes from us was there with his family. The Leeker family was there. Let me tell you, I think Hope Leeker is just about one of the cutest little girls ever! Angel Anthony's family was there, I had a very touch talk with his mom and dad. Dalton Shell, the first transplant Krabbe child at Duke was there...what a cutie...what an awesome family. Laura Cross was walking! She was amazing...Her mom made up a beautiful booklet of families writings, she uses my entry form April 29th. There were so many other Angel families there...babies that could have had a chance if there was newborn screening, please call your elected officials and ask for them to support newborn screening for Krabbe Disease! Great time with the Hunters Hope volunteers! Mackenzie even wanted to bring one home, Erin became Mackenzie's best friend on Saturday! There were so many great people, I could possibly mention them all! I will update you about more terrific families soon. I am still overwhelmed with the amount of love and support that was there. They are incredible people. Those of you who know me, know how sensitive I can be at times, so a few things hurt my feelings and as she has been there the last 9 months, Kelly was there for me.
Well, I am still so excited about everything, but as I start to process it more, I will fill you in on the details!
Thank you all and God Bless!
Tuesday, May 18, 2004 10:45 PM CDT
Alot has been going on around here, Ashleigh keeps us busy.
I talked to Dr. K and Sue this week, Dr. K is going to do an exam in NY on Saturday before we make any med. changes.
Ashleigh's evoke potential test results are back (this is her hearing and vision test). Her vision is the same as before transplant, not any better but not worse either. Her right ear was also the same. However, her left ear did show some improvement! We are happy...it is only a matter of time before we have all around repair. Her little brain is working on it, I am sure.
I already told you about the increase in therapies, well there are going to be more of them...her is starting Aqua therapy next week! This is great, her immune system is getting stronger and the pool will be wonderful for her bones.
Dr. Renwick called today because Ashleigh blood result came back and some of them were a little crazy. Her FK506 was extremely low but her creatinine was high again. The concern is the FK because that could cause graft vs. host if it is not kept to a higher level, Ashleigh has been a little more fussy, so that may be the reason.
We are leaving in the morning for the symposium in NY, I can't wait to meet so many other Krabbe families. I will let you know how everything goes. God Bless.
Sunday, May 16, 2004 8:19 PM CDT
Ashleigh has been a little fussy today, not really sure why. She had a few busy days..her first social gathering was a candlelite ceramony for the military. It was an outdoor event, so Dr. K was okay with us taking her out. She has been fussy ever since. I think we tired her out. Wednesday we leave for the symposium, Dr. K said she will do Ashleigh's exam up there. We will make any med. changes then.
I have alot of packing to do, it is amazing what children need to go away for 4 days. I am so excited to meet all of these families. Kelly, Terry (Kelly's friend), Ceclia (Kelly's daughter) and Jordan (Ceclia's friend) stopped by tonight on there way to NY. They had dinner and went to the city for a couple of days before heading to the symposium. It is alway great seeing Kelly. She is so sweet. My sister, Jerri, her husband, Jim and their daughter Samantha also came by to see us before we left and to sponsor Ashleigh for a walk to raise money for Krabbe research, they also came to wish me a happy birthday (monday).
We are going to be doing a fund raiser for Hunters Hope, detail will be coming soon. We will be selling t-shirts with the childrens names on them. I will let you know the details as soon as I am sure of them.
Thank you for your continued support.
Sunday, May 16, 2004 8:19 PM CDT
Ashleigh has been a little fussy today, not really sure why. She had a few busy days..her first social gathering was a candlelite ceramony for the military. It was an outdoor event, so Dr. K was okay with us taking her out. She has been fussy ever since. I think we tired her out. Wednesday we leave for the symposium, Dr. K said she will do Ashleigh's exam up there. We will make any med. changes then.
I have alot of packing to do, it is amazing what children need to go away for 4 days. I am so excited to meet all of these families. Kelly, Terry (Kelly's friend), Ceclia (Kelly's daughter) and Jordan (Ceclia's friend) stopped by tonight on there way to NY. They had dinner and went to the city for a couple of days before heading to the symposium. It is alway great seeing Kelly. She is so sweet. My sister, Jerri, her husband, Jim and their daughter Samantha also came by to see us before we left and to sponsor Ashleigh for a walk to raise money for Krabbe research, they also came to wish me a happy birthday (monday).
We are going to be doing a fund raiser for Hunters Hope, detail will be coming soon. We will be selling t-shirts with the childrens names on them. I will let you know the details as soon as I am sure of them.
Thank you for your continued support.
Wednesday, May 12, 2004 5:58 PM CDT
Ashleigh has slept most of the day, I think the heat may be getting to her. Part of Krabbe Disease, causing some of the kids to have body temperture problems. She did smile once. It is always beautiful to see.
We are going to have blood drawn at home, then head over to the hospital for feeding therapy with Sara and then see Dr. Renwick for a physical exam.
I started to make a list of all the stuff we need to take with us to the symposium. The list is huge...and I only have Ashleigh's list done. Things like her suction machine and pulse-ox, medications, kid kart, other medical stuff. I am so afraid of forgetting something. Dr. K said she will check her out when we are up in NY. I can't wait to see her.
Last night, Sara called to tell me that Dr.K was on the Discovery Health channel. Mason Williams was on there for his journey through transplant for Bubble Boy Syndrome. I have seen it about 10 times, but still watch it everytime it's on. Mackenzie saw Dr. K and was so excited to see her, she didn't understand why she was on our tv when she belongs in North Carolina. Mackenzie sees things in such a great way, I love the mind of 4 year olds.
Thursday, will be one year since Ashleigh had her 6 month check up. At that appointment the doctor was concerned with her not staying on the growth chart curve. I was concerned with her lack of abilities. Failure to thrive was our diagnoses and we were sent to a GI. Wow, the way this all hits, the memories of this all starting. I am glad we will be with the other Krabbe families next week. It will be the first anniversary of Ashleigh's first hospitalization. When they ordered MRI's, EEG's, lumbar puncture and a whole lot of blood work. Thank you for you all traveling this journey with us. It has been rough but knowing we have the support and love that you all have given us makes it, well easier. Thanks
Wednesday, May 12, 2004 5:58 PM CDT
Ashleigh has slept most of the day, I think the heat may be getting to her. Part of Krabbe Disease, causing some of the kids to have body temperture problems. She did smile once. It is always beautiful to see.
We are going to have blood drawn at home, then head over to the hospital for feeding therapy with Sara and then see Dr. Renwick for a physical exam.
I started to make a list of all the stuff we need to take with us to the symposium. The list is huge...and I only have Ashleigh's list done. Things like her suction machine and pulse-ox, medications, kid kart, other medical stuff. I am so afraid of forgetting something. Dr. K said she will check her out when we are up in NY. I can't wait to see her.
Last night, Sara called to tell me that Dr.K was on the Discovery Health channel. Mason Williams was on there for his journey through transplant for Bubble Boy Syndrome. I have seen it about 10 times, but still watch it everytime it's on. Mackenzie saw Dr. K and was so excited to see her, she didn't understand why she was on our tv when she belongs in North Carolina. Mackenzie sees things in such a great way, I love the mind of 4 year olds.
Thursday, will be one year since Ashleigh had her 6 month check up. At that appointment the doctor was concerned with her not staying on the growth chart curve. I was concerned with her lack of abilities. Failure to thrive was our diagnoses and we were sent to a GI. Wow, the way this all hits, the memories of this all starting. I am glad we will be with the other Krabbe families next week. It will be the first anniversary of Ashleigh's first hospitalization. When they ordered MRI's, EEG's, lumbar puncture and a whole lot of blood work. Thank you for you all traveling this journey with us. It has been rough but knowing we have the support and love that you all have given us makes it, well easier. Thanks
Tuesday, May 11, 2004 1:54 PM CDT
Well, a few things have been happening that we were not sure how to share with you all, but now after going over it all with Dr. K and Sue, we are ready to fill you all in.
Ashleigh's donor cells have tested at greater than 99%, that was what it has been in the 3 test since transplant. However, during our last visit to Duke, the drew blood for a donor count...well it dropped to 90%. We were very upset and worried about the drop. Sue said they never had a metabolic patient loose their engraftment this far out of transplant. I talked with Dr. K, and she said NOT to be worried about it. If Ashleigh dropped below 50% then she would be concerned, Ashleigh needs to keep 10% donor cells to keep her enzyme and she must keep the enzyme level at a least .8mg. We do not have her new enzyme level. We are going to draw blood and test her donor cell count again in two weeks just to make sure it does not drop again. Yesterday, Sue called to make sure I didn't have anymore questions about it and to be sure I wasn't still panicing about it. She said that the new test the do gives a percentage count, they are finding that the count often goes up and down and that Ashleigh is fine.
We are still working on getting all of Ashleigh's care set up. It is amazing the hoops we are jumping through. The insurance company is sending a request to my husbands employer asking for them to expand the home benefit package for us, this will enable us to get a nurse for Ashleigh.
Ashleigh smiled this morning, it was so beautiful. I love the way her face lights up. She is so sweet and innocent. Next Wednesday we are going to NY for a medical symposium. Hunter Kelly's parents started Hunters Hope, they invite all the doctors involved in research and treatment to come talk to the families. It will also give us an opportunity to meet the families that we have talked to on the phone and on the computer. I am so excited to see these families who have come to hold a special place in my heart.
Below is a poem another caringbridge family sent to me. It is true how the families bond, it does not matter if we have met face to face...we come to know each other, we share an incredible bond. Thank you, Tami.
To You, My Sisters
by Maureen K. Higgins - submitted by Tricia Luker
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offic! es and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against th! ose mothers whose children's needs are not as "special" as our child's . We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and pschylogy.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with sp! inal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found w! ays to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Monday, May 10, 2004 8:07 PM CDT
All is great with Ashleigh. We are getting very excited to go to the Hunter's Hope Medical Symposium. We will meet with a bunch of Krabbe families. It will be wonderful.
Today Early Intervention came out to to a do an evaluation to increase Ashleigh's therapy. She had a few more rash breakouts. Everything else is going well. We will be so busy with therapies, improving Ashleigh's life. Last night, I was trying to sleep, Ashleigh didn't think that was a good idea. She was fussing, I put my face up to her face, it was soothing for her and so intimate to me. Ash and I have a bond that is amazing to me. She is so calm and content with touch.
Another caringbridge family sent this to me..I know it is long but it is worth the time to read. Thank you all and God Bless.
Thank you, Tami! I love it.
To You, My Sisters
by Maureen K. Higgins - submitted by Tricia Luker
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offic! es and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against th! ose mothers whose children's needs are not as "special" as our child's . We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and pschylogy.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with sp! inal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found w! ays to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Thursday, May 6, 2004 10:35 PM CDT
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from earth
"it's time again for another birth"
Said the Angels to the Lord above
This Special Child will need much love.
His progress may seem very slow
Accomplishments he may not show,
And he'll require extra care,
From the folks he meets way down there.
He may not run or laugh or play,
His thoughts may seem quite far away
In many ways he will not adapt
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please Lord, find the parents who will do
A special job for you.
They will not realize right away,
The leading role they're asked to play
But with this child sent from above,
Come stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heaven's very special child.
-unknown
Thursday, April 29, 2004 11:19 PM CDT
Tonight we sit in our home...the house is quiet, Mackenzie is sleeping. Ashleigh is recieving her last feed/medications for the night. Her head is on my lap and she is awake, looking around. She is so beautiful, her face so perfect, so angelic. She is my hero and I am so lucky to be her mommy. I could never be more proud of my girl as I sit a look at her.
It was this time last year that her symptoms were becoming more noticable. Her crying all day, her odd sleeping positions, her stiffness. I don't remember exactly when each started, I suppose I could trace some back to birth. She had wonderful head control from the day she was born. However, that slowly disappeared. Howard would lay on the floor and raise her above him, we were so impressed by how strong she was because she could hold her body out straight. We know now that she was stiff because of the Krabbe. I remember her sleeping in odd positions and saying to my friend that she slept so weird. We know now that she was doing a neurological pose called arching. I thought she cried because I was spoiling her. I know now that you can not spoil a baby, you can not give them too much love or attention. As hard as those crying days were, our rocky road was only beginning.
Tonight, as I sit and look at Ashleigh, I celebrate her with all my heart. This year of turmoil, of roller coaster rides, of struggle, now brings us to celebrations. We celebrate Ashleigh for the fighter and winner she is. We celebrate the friends we have made and treasure each of them. Our hearts are full. We smile for the angels that have touched our lives and pray for their families.
When we started our transplant journey, Ashleigh was given a 40hance to survive the transplant. We were scared of such low odds, but at home we would have less odds, Krabbe would give Ashleigh 0hance to survive.
As part of our studies we do blood work for enzyme levels, immune fuctions, we do spinal taps, MRI's, EEG's, Nerve Conductions, EKG's and many more. We now celebrate the HOPE and HEALING that DUKE has given us.
We don't have the blood results back yet, they take a month. Ashleigh's spinal tap was okay, her protein is stable and her pressure is normal. Her MRI did show that there is no fluid present (the rest of the MRI results takes months to get back). EEG didn't show seizure activity, Nerve Conduction shows some improvement, some stable and a little damage. Her EKG was normal. All of this is wonderful but when we sat with Dr. K, after she examined Ashleigh...she shared the most wonderful news that a Krabbe transplant family could ever hear, well any parent of any leukodytrophy child for that matter... Ashleigh's brain is healing. Her MRI that was done is December (yes, December...told you it took months) shows that Ashleigh's brain has begun to re-mylinate itself. This is what the transplant is for. WE DID IT! We fought back, beat the odds and won! Like the Trimper Family says...Kicked Butt!
I believe Ashleigh will continue to amaze us all. She will continue to smile, she will eat, talk and even walk one day. She will continue to fight and win. For these sweet milestones...we thank you all for your support, the doctors who helped diagnose Ashleigh so quickly, the staff of both Duke and duPont, the therapist who give Ashleigh the strength to fight, 5200 you are awesome, Dr. Renwick, Sue Wood and Dr. Kurtzberg we thank for taking a chance on a little girl with low odds. Mostly, we thank a mother, who so kindly donated her baby's cord blood and helped us save our Ashleigh from Krabbe. God Bless you all.
This song has become so special to me, it is my song with Ashleigh.
In My Daughter's Eyes
by: Martina McBride
In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me gives me strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daugter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy she made me
For I'll be there
In my daughter's eyes
Tuesday, April 20, 2004 9:32 PM CDT
It is as if we crossed the North Carolina border and a huge amount of weight came off of me.
I called Dr. Kurtzberg when we were a 1/2 hour away from the hospital. She said to come right in. Ashleigh had blood work, a x-ray and an EEG. Her blood was get, nothing to be worried about. The x-ray was clear, no signs of aspiration. The EEG was also good, not seizures. She then gave Ashleigh a dose of Solumedrol (strong steriod). For the first time in 5 days, Ashleigh slept through the night, and so did I! The rash cleared up alot and we are getting back on track.
Today, we went to clinic again. Ashleigh was examined. Had blood work. We talked to Dr. K. She wants to continue on the Solumedrol. Get a MRI, to make sure there is not any fluid on her brain, which cause farther brain damage. She asked us to stay until at least next Tuesday. Of course we said yes, what ever is best for Ashleigh. So as long as we are here we are going to do all of our 9 months post transplant studies. They scheduled the MRI, Echocardiogram, Lumbar punture, BAER/VER, and a couple of more. We will not see Dr. Greene (eyes) or Dr. Escolar this time. We will see them in July/August.
We went to the Ronald McDonald House to have dinner with some of the other Krabbe families. Kelly (David's mommy and Hunter's Hope employee), her daughter, Lori and Degan, Theresa and Daryn and Theresa's sister.
While at clinic today, I went over to 5200 to see a couple of other Krabbe families, I met Ryan's daddy and Jason's mommy. Jyrve's was sleeping. Dylan came to clinic while we were there.
Please pray for all of these very special kids, they are great, such fighters.
We are so happy to be back here, we know Ashleigh is in good hands and we are thrilled Ashleigh is getting back on track. I will update on how her test are going.
Sunday, April 18, 2004 12:04 AM CDT
Help is on it's way...we are heading to Duke, to Sue, to Dr. Kurtzberg. Dr. K wants a MRI and an EEG, I will keep you posted as we find out what is going on...
Pleae continue to pray for our Ashleigh, and Thank you so much for you continued support of our baby girl, and our family.
Saturday, April 17, 2004 10:33 PM CDT
I wish I was writing to tell you all that Ashleigh is back to "normal" and everything has gone away but it hasn't. I e-mailed Dr. Kurtzberg to ask if I could bring Ashleigh down to her, or if she can contact Children's Hospital of Philadelphia. I am sure duPont's team did what they feel is right for her but I am scared we are missing something. Ashleigh's rash spread to her cheek, so she is covered everywhere except her one cheek and her forehead...she even has spots in her hair. She is crying and has some pretty messy diapers still.
When Ashleigh first started showing symptoms of Krabbe, I thought I was being an over protective mother and looking into things too much, two months later she was diagnosed with a disease that was terminal. I am afraid of missing something, of letting something get to far, of my baby leaving me. I don't want to dismiss something that could harm her even more than this damn disease did.
I am tired, scared and so frustrated. Am I over reacting, I hope so. I want to wake up and this all be over...Ashleigh running around like every other 16 month old, happy, laughing and getting into things. But that is not possible, so I just want to wake up and see her beautiful face and know that she is comfortable and happy to see me.
This time last year, she began arching her back, crying and holding her hands in tight fist. This year on Easter Sunday, she smiled twice and fell asleep with her head to the left (she never turns her head to the left). It was a great day for her, less than twenty four hours later she was going to the hospital.
Please pray for our Ashleigh, pray for all the children who suffer...
Friday, April 16, 2004 10:23 PM CDT
Alot has happened and I am not sure where to begin...
We are home! I am not sure if we should be but we are and happy to be. I had to give Ashleigh a large dose of Ativan to relax her. She was going into a scream/cry every few minutes for hours. Not her normal "krabbe cry", more like she is in pain or uncomfortable. I talked to Duke alot today. They think Ashleigh has Graft vs. Host Disease again. Only on her skin, we are treating it with steriods and creams for now. They were not sure about her cry, but after talking more and new symptoms coming into play...they think she has Rotovirus. We are taking a diaper to Dr. Renwick to culture. This is all new since coming home. She is still having some breathing issues, has a rash from head to toes, unusual body temps., now crying and some pretty messy diapers. We may be heading for Duke by Sunday.
She came home on IV antibiotics, a nurse came out to show me how to run them, every 8 hours. Ashleigh gets her regular medications, her regular feeds, now IV 3 times a day. We will not even express the amount of frustration I have right now for the lack of help I was sent home with.
I will explain later about all of that, it is a very long story. We are working out a few issues and then I can explain more.
Dr. K and Sue have been awesome putting up with a very emotional mommy and daddy the last few days.
Thank you all for your extra prayers and support. You have been so great to us. Thank you so much.
I also wanted to thank the nurses and therapist at duPont hospital...you were great with Ashleigh and patient with a very fussy mommy! Thanks
Wednesday, April 14, 2004 1:31 PM CDT
We will be here for a while...
Ashleigh has a Gram Positive Cocci called Staphylococcus.
She is on a very strong IV anibiotic called Vancomycin. They need to continue culturing her every few days. If they can not "clean" her blood, we will have to remove her port. This bacteria "clings", so if it is strong enough to resist the Vancomycin then the port must come out. Then when her blood is "clean" we will place a new one. They ordered us therapy here and are very patient with Ashleigh, okay, with me. I will keep you updated on any changes. Thank you for the extra prayers.
Tuesday, April 13, 2004 0:56 AM CDT
Ashleigh was admitted to the hospital late last night. I fed, changed and was holding her when I noticed she was breathing a little heavier than normal. I hooked her up to her pulse-ox and her saturation was only in the 80's, it stayed there for an hour so I called the doctor. While on the phone she dropped to the 70's for a minute but brought it back up. We came to the bone marrow unit at duPont and was admitted for observation and preventive care. The have drawn blood, did chest x-rays and started an antibiotic. Nothing has shown up so far. We should be home in the morning.
Last time Ashleigh did this, we found compression fractures. They did not see them this time.
Please say a prayer that everything will be okay.
Friday, April 9, 2004 11:26 PM CDT
I wrote you all a long update last night, and lost it. I was so tired and mad, I gave up and went to bed.
First, I hope you all have a wonderful holiday weekend, full of love, happiness and family.
Ashleigh's clinic visit was both good and okay. Ashleigh smiled at one of the nurses. I didn't see it, the nurse told me. That makes 3 times in 9 days. We took one dose of steriod and vioxx away. She gets 1 ml of steriod once a day and 4ml of vioxx once a day now. We also got rid of her enalapril, for her blood pressure. We love when we get to wean her off of some medications. I hate pumping her full of this stuff, but I also know that it is the only way to help her and make her comfortable. The part of clinic I wasn't happy with was her labs. were a little off, her white blood count doubled in a week. Which could be a sign of infection or could mean nothing. As always, we wait. If it is an infections, her counts going up shows her immune system is doing it's job by sending the white cells to fight. We are just going to have to see how she reacts, right now she does not have any physical signs of anything going on. Also, her creatinine (kidney functions) jumped back up to 1.0 from .8. Again, we wait.
Ashleigh's therapist are so pleased with the way she is responding. She can make some noises, kind of like a grunt or moan. She fights them, pushes and tries to resist certain positions. And of course the smiles.
Last night, I got very emotional, I wrote a long letter to another Krabbe mom, but didn't send it. I don't know if it coming up on the anniversary of Ashleigh's diagnoses or just things finally catching up to me. This sites is one of my few outlets, that and other moms who have traveled this road. Somedays, this is my only outlet. I know alot of people don't check in anymore but I still get all of this out. Thank you. I cry everyday, for no apparent reason, anything could set me into a long cry. Two children that I have been following on the caringbridge sites earned their wings this week. I check on about 30+ kids everyday. I have come to love each of them, some I know, some just through their sites...but all are so special. All different ages, races, religions, diagnoses but all fighting a battle to live.
Dr. K gave us permission to take Ashleigh to the Hunter's Hope Medical Symposium in May. I am so excited for her to meet all of the other Krabbe families. This will be her first outing and we are so, so excited. I can't wait. Dr. K will be there too.
Well, Mackenzie just woke from a dream...must go.
Thank you. Happy Easter.
Love and HOPE to you all.
Thursday, April 1, 2004 11:12 PM CST
I know I just posted a few hours ago but this was too exciting to hold in. Tonight our Aunt Lyn was holding Ashleigh and I was playing with her. I kept kissing her cheek real hard and saying "give me kisses, here comes mommy's kisses" - she smiled!!! I thought I saw it and Aunt Lyn said "she smiled". I started to fill up to cry, the excitment was unbelievable. I tried to get her to do it again, but she didn't. I haven't seen Ashleigh smile since July 22nd! What a beautiful night!!!
Tonight, I recieved the most special present from my sweet baby girl! Absolutely Priceless!
Thursday, April 1, 2004 1:41 PM CST
I updated this morning but pushed the wrong button and erased it all so here we go again...
Ashleigh's labs came back great yesterday, her WBC was 6.8, Hemoglobin was 10.6, platelets were 398.
Her creatinine(kidney functions)came down a little to .8, so we are getting back to normal just moving a little slow. Hey, we will take it any way we can get it, right? Everything went really well, the doctors even commented on how much she was awake and moving. They reommended stopping four medications (Pentamidine, Acyclovir, Trimox and IVIG) but Dr. K said no...she doesn't take those medications away until we get her off of the FK506. The four listed above are to protect her from various illnesses, but the FK506 weakens the immune system. So we don't want to take the chance of her getting sick. We should start to wean the FK in May. Then the others can just stop, they don't need to be weaned. We are very excited to start getting Ashleigh off of medications. I thought I would update you all on her list of medications since I haven't done that in awhile.
Acyclovir *twice a week
Ativan *three times a day
Baclofen *three times a day
Bicitra *three times a day
Calcium *twice a day
Vitamin D *once a day
Vioxx *twice a day
V-fend *twice a day
Trimox *twice a day
Topamax *twice a day
FK506 *twice a day
Enalapril *once a day
Orapred *twice a day
Prilesec *twice a day
Methadone *twice a day
Poly-vitamins *once a day
Pentamidine *once a month
IVIG *once a month
Occupational therapy - twice a week
Physical therapy - three times a week
Feeding therapy - twice a week
Visual therapy - twice a month
Ashleigh keeps our schedule very good, but all of this work is making her better. So well worth it, huh?
Thank you for your continued support.
Tuesday, March 30, 2004 9:52 PM CST
We are going to have clinic in the morning...Dr. Trigg needed to change our day this week from Thursday. I don't know why, it isn't really a big deal. We will miss feeding therapy this week because of it, the therapist in on vacation and was suppose to return Thursday. I have some more exciting news to share with you all...well, it is hard to explain without you being able to see for yourself but I will try to express the excitement the best I can...Ashleigh has been moving and awake ALOT! She is sucking her thumb when you put her hand up to her mouth for her, she moves her head very slow, her arms and sometimes I feel like she pulling up her legs to help me change her diaper. She is also "communicating" with us...she cries when she needs her diaper changed and is hungry. She even cries to tell us to change her position. I will check her diaper and move her over to her side and she will stop crying. Some of this may be me wanting it, but she really does seem to be doing so much more. Her OT, Justine, put Ashleigh's hand on a crinkle toy and she said that Ashleigh was moving her hand to make the noise. She did it 4 times in a row, so Justine didn't feel that it was an accident. The movement was coming from her shoulder not her body, so Justine said that is wasn't an accident!! For the non-Krabbe families, Hunter's Hope has a medical symposium where all the doctors researching/treating Krabbe/Leukodystrophies will come and talk, all the families get together and we have family sessions, all kinds of stuff. It is in May, in NY. Well Dr. K said Ashleigh can go! How great is that, I am so excited to introduce her to our Krabbe "family". We are trying to schedule our 9 month post transplant studies at Duke also but we are having some conflict with a couple of the doctors schedules.
Friday, March 26, 2004 12:54 AM CST
I got a wonderful e-mail this morning that I thought I would share with you all...I e-mailed Dr. Kurtzberg with some questions about Ashleigh. One of my questions was if Ashleigh's immune studies are back. Dr. K's response was..."Ashleigh's immune studies are normal, Congratulations on these test results" Yes, you read it right, NORMAL! We are still under restrictions because even though it is functioning normal it is still weak. Dr. K warned that she can still easily get sick and infections are still dangerous. We can go to small shops (like Smithville, Peddlers Village, the zoo) No petting zoos, malls, church, or large stores....more to come, Ashleigh needs me.
I'm back...so we spent most of the day dancing around and singing a song about the word normal. Yes, we are just a little excited.
Ashleigh did have OT today and as always she was wonderful. She is trying to push the button on her switch toys, she lifts her head, today she put weight on her legs and was awake the whole time. Her therapist, Justine, after every session comments on how strong she is and how much improvement she sees in her. Justine is full of information, she really knows alot about the different things that will help Ashleigh gain strength. We are going to get her a couple of new therapy "toys" and when we see Dr. K in May we hope to move forward with different types of therapy and equipment.
Ashleigh is my daughter, my inspiration, my love, my hero. I can not express how proud I am of her and how lucky I feel to be her mommy. She continues to fight everyday and she will continue to amaze us all. Tonight I was holding her and I told her that she did it, she beat the odds and she won her war with Krabbe. She is injured but she has won.
Thursday, March 25, 2004 1:56 PM CST
Clinic went good today. Ashleigh's creatinine continues to go down, it was .9 today. So we are slowly getting there. She hasn't had therapy this week, her OT is on vacation, her PT's son is sick with a virus. We will have both therapies on Friday. Oh, Ashleigh did have feeding therapy today, Sara is so great with her. Ashleigh ate blueberry/pear food mixed with oatmeal cereal and some cinnamon graham cracker. Her blood counts are great. WBC was 7.9, Hemoglobin was 10.9, and platlets was 351. They even mentioned her donating platlets. After we talked about that, I requested the information for me to be a donor and for me to donate bone marrow. After all Ashleigh's donor and her parents played a huge part in Ashleigh's battle. I thank them everyday.
I talked to a couple of other Krabbe mom's...we were saying how we see our children do things but we are not sure if they are really doing them or if is just what a mom wants to see. Ashleigh has been doing alot more with her head, legs and her face...She seems to light up at times, she loves to be snuggled and kissed. She was lifting her right leg and she seems to pull up her legs up at times when I change her diaper, not everytime, but it does feel like she is trying to. In therapy she lifts her head and turns it to the right, and slightly to the left. She is constantly moving her mouth, sucking, "chewing". She pumps her tongue and moves her jaw. I see so much determination in her. She is amazing.
Sorry not much to update, in some ways that is good, HUH?
Saturday, March 20, 2004 1:23 AM CST
Ashleigh has made some woderful progress this week. She has not been shaking as much, hardly any at all. She does startle and then shake some, but not the constant shaking that she was doing. Thank you for your prayers, they really scared us and poor Ashleigh was so uncomfortable with them.
Her clinic visit was good, fast and great result. Her creatinine (kidneys) came down some, they are not great but at least we came down. We will pray for them to come down again. They were 1.3, now they are 1.0. As Mackenzie says, WHOOOO-WHOOO! All her other blood results look great. Her WBC is 9.6, Hemoglobin was 10.9, and platlets were 280. All her chemistries and functions were either great or better. We lowered her steriods a little since there isn't any rash. She has a couple of days with some GvH around the eyes but that is usually taken care of with some Protopic cream.
Ashleigh has been using the yoga ball in therapy. She lifts her head and slightly turns it. Also her sucking has been awesome. Debbie (PT) lifts her hand half way up to her mouth and Ashleigh pulls it the other half, she will suck her thumb/fingers for a bit. Sara (ST) was so exciting abou the sucking because that is usually a skill that is lost if it is not used and Ashleigh hasn't used it because of the G-tube (feeding into her stomach). She has been working hard in all of her therapies. She ate alot in her feeding therapy this week, I think it was Apple/Mango/Kiwi, she loved it. She also had a lollipop and cinnamon graham crackers. Today Mackenzie sat with her and gave her a lollipop. Mackenzie is so good with her, so patient and gentle. She includes her in everything and doesn't look at her s and talked about everything. About Ashleigh, Krabbe, newborn screening, me and Howard's journey, future treatment and how much we appreciate her and Dr. Renwick, their treatment and care helped Ashleigh in so many ways. They are both wonderful.
It has been almost a year since we started this journey. One that wasn't in our plans, one that we never expected. As the "anniversary" of Ashleigh journey quickly approaches, the emotion attack me. Some that I have put aside for a long time. The days leading up to the diagnoses keep replaying in my head. People's advice and opinion, all the different doctors coming and looking at Ashleigh and just leaving with no information. Sitting with her crying. Then the day that we sat in Dr. Arch's office and were told that Ashleigh had Krabbe, that she would die. All of these keep rushing through me head. The transplant is a blur right now, just the days leading to it are so fresh. Holding Ashleigh and wanting to know why. What did we do wrong? Why did this happen? How can God give us a perfectly healthy baby and take her from us? Is there a God? What could be the reason for this, what was His plan? What could possibly be learned from a child suffering?
Howard and I sat and cried for hours, not knowing what to do, how do we tell Mackenzie that the sister she loved wouldn't stay with her. Our plans for the future would not be. It was unreal to us. I remember talking about it and in my head, it wasn't happening to me, not to my daughter. It was on the news or in the paper, but it was not my daughter that had this rare disease that no one knew of. It wasn't until we were in transplant that reality set in and I realized that it was our daughter, our beautful baby girl was going to have the fight of her life at only 8 months old.
We are exactly 2 months way from our first hospital stay. Around this time last year, Ashleigh was beginning to show symptoms. I can't pin point the first time I thought something wasn't right. I try to think back but I can't say a certain date. I remember feeling a distance between us, I know it sounds terrible. I felt that I was having a hard time "bonding" with her, I thought it was because of having two children, not being about to spend enough quality time with her. I later thought that it was my way of knowing that she was sick and wouldn't be here forever, kind of safe guarding my heart. Today, I feel closer to her then ever, she IS my heart. I also remember telling a friend on the phone that she sleeps in the weirdest positions, I know now that she was arching, a neurological pose that children with brain diseases sometimes do. I remember complaining she cried all the time, I wish today I had more patients with it. I don't remember when the stiffness started, when her thumbs tucked in, when she began the crying. I just remember them being there. Little things being there that I thought was not right but people just told me I was being over cautious, she was fine. You see, when I was pregnant I had a ultra-sound tech tell me that she suspected something was wrong. The report thought Down Syndrome, I went to a specialist who said no, there was a 1/5000 chance of her being a Downs baby. I thought I was just scared after that, so maybe I let things go that I wouldn't have. I just thought I was being paranoid. I went over a friends house and her son was in a excer-saucer. I went home, put Ashleigh in hers, after all they were the same age. Ashleigh couldn't do it. Her head wouldn't hold up, her legs slid from under her. When did she loose her ability to hold her head up? She was born with wonderful head control. I knew something wasn't right, but never amagined it to be fatal. The day after Mother's Day was her 6 month well visit...it all came crashing down in the weeks to follow that appointment. We tracked what she ate for a week, the doctor wanted two weeks, but I called and said I needed more. He tried to get us into Children's Hospital of Philadelphia, but they couldn't take her. We went to duPont doctors, I thank God for that. I remember one person saying that we needed to get her to C.H.O.P., they were better. No way, I am so happy that we stayed with duPont. I know of one Krabbe child that C.H.O.P. has. duPont was so good to us, the fast diagnoses (at the time it didn't seem fast), most of the staff, the information about Krabbe and treatment. Most children are misdiagnosed and then told there is no treatment, to later find in via internet.
On May 19th, we had our first specialist appointment with a GI doc, who caught something being neurologically wrong before he even examined her. Those days flood my memory, as the days come closer, I will share more with you.
Thank you all so much for the support you have given me, Howard, Mackenzie and Ashleigh over the past 10 months. Everytime I write here, I take so much off of me, thank you for always being there, supporting us, praying for Ashleigh and being so wonderful to us. Thank you to all the doctors who were so wonderful to our Ashleigh. You know who you are and I thank you everyday for helping us, "save" her.
Good-night.
Monday, March 15, 2004 7:42 PM CST
Not much going on here. Ashleigh had a tough couple of days over the the weekend.
Dr. K allowed us to lower Ashleigh seizure medication and over the past few weeks we also lowered her Ativan and Methadone. We are doing a slow wean, hoping to wake Ash up more. By doing this we run many risk, causing seizures or making her go through withdraw.
So Friday night, Ashleigh began shaking. My first thought was withdraw, but she had not other symptoms. By 2 in the morning, we were all tired...Ashleigh was shaking and crying. We gave her a extra dose of Ativan and some tylenol (we have done this before, under Dr. K's care). Ashleigh went right to sleep and we all got some much needed sleep. Saturday she starting shaking and trembling again. I called Duke, we came up with the cause. Ashleigh is awake more, making her move more...the Krabbe has damaged nerves so when she tries to more, the nerves are sending mis-signals, causing Asheigh to shake. We watched for a couple of more days, and it is getting better.
We didn't do the extra blood draws today, we will have clinic on Thursday.
Please say a prayer for Dylan tonight. He had a very risky surgery and is in PICU tonight. Also please keep Daryn in your prayers, he is having complications from transplant and in need of alot of prayers. Both of these boys were at Duke with us and have come to mean alot to us.
Thank you.
Good-night.
Friday, March 12, 2004 8:12 PM CST
Sorry for not updating, we have been so busy.
We had to be a clinic at 8:00am to meet with the neurogist. Dr. Bean was very nice, had alot of interesting information about leukodystrophies, he has treated many different kinds including Krabbe. He recommended that we lower one of Ashleigh's doses of Topamax, because she is so sleepy. He also understood that we have worked with Duke since this started 9 months ago and feel comfortable with them. He said to check with Dr. K and let him know what she thought. I am glad he understands that, it is hard not knowing who to listen to. I don't want to disrespect the doctors here but we have a relationship with Ashleigh's team at Duke. Well we did check with Dr. K and she agreed to it. We were surprised.
Next they drew Ashleigh's blood and started her on IVIG. The feeding therapist came in, Ashleigh had a great session. Afterwards, Sara (therapist) sat and held her in the chair for a while. She is so good with Ashleigh, she loves her and Ashleigh knows it. We have been lucky with getting great therapist through this whole journey. Ashleigh did well with her other feeding therapist, Lisa, too. Next Bridy, OT, came in. She didn't work Ashleigh. She made her splints for her hands, so we can stop Ashleigh's fingers from making a fist and becoming tight.
Dr. Trigg made some med. change recommendations and told us to ask Dr. K for her opinion. Ashleigh's creatinine was high again, so we lowered her FK506, and cut her Acyclovir to every 3 days. The FK could be risky because of GvH but hopefully we will control any breakouts with Protopic cream.
Today Ashleigh had a wonderful PT session. Debbie had her bringing her hand up to her mouth and sucking on her fingers. She also lifted her head and turned it a couple of times looking for Mackenzie. OT was a messy one...Justine had her playing with baby food with her hands and bringing it to her mouth to eat. They also worked with toys, turning them on and massages.
Two Krabbe kids that we have become close to are going into surgery soon, please pray for them. Dylan is having stomach surgery and Ryan is having hip surgery.
We are doing blood draws on Monday for a repeat of Ashleigh's kidneys (creatinine). I will update then.
Thank you all for everything.
Saturday, March 6, 2004 8:52 PM CST
I had a pretty lengthy talk with Sue about Ashleigh enzyme. Sue and Dr. K say to just trust them, Ashleigh is fine. So I do, I put all my trust into two of the most amazing women I have ever met. I recieved my copy of the report/result today, it has 2.9 for the level and at the bottom is says "normal" and that is all that matters. Yes, it is lower but apparently that is how the test runs, next time it can be different.
Thursday was a hard day, it was like being told that she had Krabbe all over again. We heard the news about the kidneys and then, SLAP!, the enzyme is down. I felt as if Ashleigh was going to die. I know that is a threat everyday, as someone so kindly pointed out to me today, but that day it was as if everything that we have done, everything we put her through was for nothing. She would still suffer the effects of this terrible disease. I have said many times, I don't think we saved Ashleigh. God will call her Home when he is ready for her. But I do feel with transplant, she would not suffer the effect of Krabbe. For those of you who know the course of this disease, it is merciless, and I do hope to save Ashleigh from the suffering. I can go on about what the last few days felt like, the things that were flying through my head but I will save you from that suffering. Thank you, as always for your support.
So, Ashleigh's enzyme level is fine, for now. Every test shows that she is stable. We couldn't be happier for her. She is truly amazing.
Good-night.
Friday, March 5, 2004 7:56 AM CST
Yesterday I talked to Sue (our nurse practitioner at Duke)alot. We got some news that we weren't going share this news with anyone until we found out what it means...but Ashleigh needs your prayers. Please pray for Ashleigh.
Ashleigh's donor cells are greater than 98 That is wonderful news, however her enzyme level has dropped to 2.9, it was 4.5 (the same as her donor). We are trying to find out what this means and how dangerous it could be for Ashleigh. We are trying to find out if the Krabbe has found a way to win this battle and if we are going back to war.
Please pray for Ashleigh, she is such a soldier!
Thursday, March 4, 2004 2:31 PM CST
Sorry it has been so long...we have alot going on and lots of good news to update.
I gave you all of the news from Duke, we still have somethings pending, but so far...all reports say stable! I love that word. Her disease is stable, her brain is stable, her nerves are stable.
Tuesday was a very busy day...first Ashleigh had PT, boy did Debbie make her work. She was in a crawling position and held herself up. She moved and opened her eyes. Okay ready for this, Debbie put the boppy around her waist and Ashleigh sat up on her own, held her head and didn't fall over, for about 30-45 seconds. She also tolerated weight on her arms and legs. It was great. I have to get her a yoga ball to work out on. Her compression fractures are healing so we are going to work her.
Early Intervention then came in, they evaluated Ash and put a rush on serves for her. They are really helpful and have alot of information.
OT was next...Ashleigh responds so well to both therapist. Justine had Ashleigh working with switch toys while laying on her side. She had alot of good ideas of things to do with Ashleigh.
After all of this working out Ashleigh slept and slept and slept. Yesterday was a day of rest!
Today we dropped Mackenzie off at school and headed to duPont with Ashleigh. Again, a busy day. They drew blood and Ashleigh had feeding therapy. Ashleigh wasn't very cooperative, but she did manage to blew "snot" all over her therapist, Sara. Then Ashleigh fell sound asleep and was snoring so we ended her feeding session. Dr. Renwick came in and we talked about home nursing, therapy, insurance, Mackenzie and some things going on with Howard. I'll explain later. The nurse hooked up Ashleigh IV pentamadine during this time and Dr. Trigg came in with the blood results. Her counts look great. Everything is good except her creatinine (kidney functions) are 3X higher than they were last week at Duke. We lowered her FK506 and now we are waiting for Dr.K to call. I refuse to panic yet, we will wait to see what happens from here. Oh we are also giving her water to help flush the kidneys. Everything else went great at clinic. It was a good day for Ashleigh but we will be working her hard soon!
Early Intervention and the Division of the Blind are coming out on the 16th to see about more therapies. Ashleigh is not going to get better by laying around...we are going to push her.
Today was Howard's neice, Nicole's birthday and a second cousin was born into the family today. Happy Birthday Nic and Welcome Madison!
The thing going on with Howard...some of his unit deployed to the Middle East two weeks ago. Now more missions are coming up and they are in need of Howard's rank and MOS. There are two missions coming up and it could be as early as next month. I am not sure how I will do this alone. Our doctors are trying to get me a nurse at home and are going to write a request for him not to go but if is not now, it will only be a matter of time before he does go. I know he signed up for this and he wants to go serve our country but with Ashleigh it is hard. I feel bad for him, he is so torn, he knows he is needed here and he doesn't want to leave Ashleigh right now but he also wants to do what he has trained to do and stay with his guys. Please pray for him and all of the men and women who so bravely serve our country everyday. They give us the freedoms that we so much enjoy.
Thank you and God Bless.
Saturday, February 28, 2004 7:46 AM CST
Some of this might be repeated from earlier in the week but I thought I would let you know all of Ashleigh's test results and about our talk with Dr. Kurtzberg.
Ashleigh weekly blood came back great. No problems at all. Her creatinine (kidney functions) were back to normal and all was good. Her immune studies and donor/enzyme levels are not back yet, they take about a month. Her nerve conduction test was the same as before transplant, not any better, but not worse either. At first we were upset but at least there wasn't anymore damage done. She is only 6 months post transplant so it is still early in this road and she could still have healing. Her breathing capacity test came back better than before transplant. Her lungs are in good shape. I told you about Dr. Escolar's appointment, so I won't go over all of that again, except to say, we are still dancing. Dr. Greene thought that the optic nerve was pale, Dr. K said next time it may show some color, it is different each time. She does think Ashleigh will need glasses. We are going to get visual therapy to come out once a month or so. Her MRI of the spine did not show any pinched nerves or anything that we didn't already know, her bones are very thin. Her MRI of the brain is still pending. This will take months, but we have our fingers crossed for it to show some new mylin. Her EEG, Evoke potentials and EKG are still out. Her arm and chest x-ray were good, no compression fractures, only the ones that are healing.
We are not going to start the new medications for her bones. Dr. K said in studies it grew bone on the outer side of the bone causing the growth plate to be covered. So Ashleigh wouldn't have room to grow. Her bones are healing with the Calium and Vitamin D. We went back up on her FK506 and didn't change her steriods because she has a little Graft vs. Host on her skin. We may wean steriods next week. We are going to rotate weaning her Ativan and Methadone. Everyother week we will go down on one of the drugs. We will wean Baclofen over the next 6 months and maybe get Botox injections after that. Robinul will only be used when we feel she needs it, when her sacreations are high. I was happy with all the med. changes we made. I want to wake her up. Dr. K was very pleased with the way Ashleigh looked and how all her test result are coming back. She does not feel we will see anymore damage from Krabbe. It is gone and she is now going to have to take time to repair what she can. Not everything will be repaired, she still will have many problems but the side effects of the chemo and the Krabbe will no longer be a threat. Now it is keeping her healthy from germs and repair though therapy. We are waiting for some results to come back for her compression fractures and then we can decide if Ashleigh can start going back on the ball and doing more aggressive therapy. When her immune system comes back we are going to start Aqua (water)and Hippo (horses) therapies. It was a wonderful visit to Duke and we are so proud of Ashleigh, she is so amazing. Everytime I look at her, I smile, she is my inspiration, my hero, my daughter.
At Duke we also got to see Dylan, Angelique and Michel. I went to dinner with Angelique one night. Dylan is having some problems, please send Dylan your support and prayers.
caringbridge.org/eu/dylan
We didn't get to see Kelly because she was a little sick, hopefully next time. Also I hope to go to 5200 in May, to see the nurses who took such good care of Ashleigh. I miss them so much. We didn't go this time because we didn't want to pass germs into the unit or expose Ashleigh to any. I also want to visit with Connie, and meet with Jason and his family (Jason has Krabbe also) and Emma, Ross, and Trevor along with their families (They all have MLD, another type of leukodystrophy) All our in transplant and could sure use your prayers.
I will update you on the rest of the test results as they come in. Thank you so much for everything, we appreciate everything you have done for us. Please continue to pray for Ashleigh's healing and for those who suffer from this terrible disease and those who are suffering from other illnesses. Thank you.
Wednesday, February 25, 2004 3:41 PM CST
Yesterdays entry was so exciting I didn't want to replace it. Today was another busy day with lots to update you on.
First last night...Ashleigh broke out with a strange rash all over her body. We stopped using her Protopic, called Sue, checked her temperture (it was slightly elevated) and waited. Every half hour all night we took her temp. waiting for it to go over 101. Then we would head to 5200. It never happened. Finally at 5 am, we went to bed. Well, I should correct that. I went to bed at midnight. Howard stayed up with Ashleigh all night. He is such a wonderful daddy.
Our day started with a 9:00am appointment with Dr. Greene, the eye doctor. He said Ashleigh nerve was pale but he thought with therapy using bold pattern that she would be okay. She will need glasses when she gets older. At first we were upset with this news but realized things could have been worse. Next we were off to a MRI of her brain. It takes so long in that tunnel. I like having them done at Duke because they let us use our medications to sedate her rather then having someone put IV sedation in and going to recovery. They also let us sit in the room with the machine that our baby is laying in. After the brain was done, they changed her position and did one of the spine. Sue met us in the MRI department and did a Lumbar Pucture, that showed no signs of pressure on her brain. She took some fluid to see how much protein was in the spine. Results still pending for the MRI's and protein. Next we headed to get a x-ray of her chest and right arm, looking for more compression fractures. The lungs were clear and they had to take a look at the spine for the fractures. The arm did not show compression fractures, only growth. Yes, my very big girl is growing more! The final results are still pending. It was a roller coaster type of day, but we are still dancing from yesterday.
Thank you all for your continued support.
With lots of HOPE here at DUKE
Michelle, Howard, Mackenzie and ASHLEIGH
Tuesday, February 24, 2004 8:40 PM CST
The only thing I can say about today is WOW, my little girl is AMAZING!
Our day started out very early. At 8:00 am we had to be a UNC for an appointment with Dr. Escolar, a developmental specialist. She is tough and has not been very positive in the pass. I always get nervous when we go see her. Well today went so good that I wanted to dance in the street. Ashleigh opened her eyes and tracked for her. She responded to a toy in her ear. She turned her head to the left and right. She responded to a "new" voice. She was incredible. Dr. Escolar gave us alot of information on things to stimulate Ashleigh. She also recommended different positions, therapies and toys. She thinks once we wake Ashleigh up and she is able to do more we will see alot more than what we expected. She had Dr. Kurtzberg to change some medications (we will talk to her about that on Thursday). She wants us to stop the Baclofen and start her on Botox injections for her muscles. By doing this it will allow her to increase the muscle tone in her neck and back. Baclofen relaxes the whole body. We have talked about it before transplant and Dr. K said no. She also recommended a medication for Ashleigh's bones, but Dr. K has told other families no because of side effects. Again, we will talk on Thursday. We will see. Dr. Escolar was very positive and gave us alot of hope for Ashleigh's future. After that appointment we went to clinic for a visit with Dr. Kurtzberg. Well, anyone who has been following our story or has been here at Duke, knows how long these days can be. We were back at the hotel by 1:30. Both Dr. Escolar and Dr. Kurtzberg in 5 1/2 hours. Dr. K examined Ashleigh and asked us to use Protopic on some skin rash that she has. We will go over all test results and medications on Thursday. It was a great day, I couldn't be happier with how things are going for Ashleigh. Thank you all for your support and prayers. We appreciate everything more then we could ever express.
Monday, February 23, 2004 4:00 PM CST
So sorry for it being so long since my last update.
First last week's clinic visit at duPont. Ashleigh's kidney's and liver look better. Her infection is clearing up and all other blood results came back okay. We are happy. She had another awesome session with the feeding therapist. She ate alot, moving the food and swallowing. It was so great. Sara, therapist, thought that Ashleigh's face looked a little thinner, she said we could see her nose and chin. She is starting to look like my baby again. She had a great weeekend. Opening her eyes, looking around.
Friday Mackenzie woke up sick,well she woke up throwing up in her bed. Changes her clothes and then comes to wake me. It was about two in the morning, Howard cleaned her room, which ended up having vomit from one end to the next because of her walking around. I gave her a bath and put her back to bed. I took her to the doctor later that morning. They took cultures of her urine and mouth but nothing has grown.
Saturday my sister and her daughter came for a visit. Ashleigh was awake looking around. Then that night we had a small birthday dinner for Howard. I ended up getting sick with whatever Mackenzie has. On Sunday Howard's mom took Ashleigh to her house so we could limit her exposure to whatever this is. Mackenzie and I slept most of the day. Later Mackenzie went to Howard's moms house and we left for Duke. It has been very eventful.
Today was Ashleigh's first of many test. We went to the clinic and had her weight, height and vitals done. They also took ALOT of blood. They didn't think they had enough blood so we had to keep her port accessed and we left for her next test. I shouldn't say we, I couldn't go to the fourth floor today because of being sick. When I am with Ashleigh, I am wearing a mask. So Howard took her to the clinic and I went to the market for dinner food. I did go for the nerve conduction test. I was so happy, I could feel her legs reacting and jumping but then the doctor said that the result are still the same as before transplant. Very damaged. I wish it was better, it was such a disappointment because I could feel her reacting to it. After that we had to go back to the clinic, the second floor for a crying capacity test. She did well, she wouldn't cry but she took some deep breathes so that was enough for them to get a good reading. Howard took her back to the fourth floor to have her port de-accessed, they did get enough blood the first time. He got her results, all functions are back to normal and she looks good. We then headed back to the hotel.
We will be busy Tuesday, we have a 8 am appointment with Dr. Escolar (developmental doctor from UNC) and then we have to go to clinic for Dr. Kurtzberg. We will be out all day. I will update you on how everything looks.
Sunday, February 15, 2004 8:43 AM CST
I have a lot to update you on but first I ask that you keep Angel Noah's parents, Debbie and Greg, in your prayers.
After spending much time on the phone to Ashleigh's nurse practitioner form Duke, Sue and several e-mails back and forth with her we have come up with somewhat of a plan. Remember last week I told you about Ashleigh shaking, Dr. K thinks that is because of pain. Ashleigh can not express things the way we do. When she tries to move, the nerves take over and she can't control it. She is moving because of the pain. We are going to get a MRI of her spine at duPont. Dr. K. did not want to wait for our visit to Duke next week. We are going to do more MRI's at Duke, while Ashleigh is already in the machine for the one on her brain. We are also going to run a couple more test at Duke on Ashleigh's bones. We increased her Vioxx and her Driscol (vit. D). There is another medication that a doctor here mentioned but Dr. K wants to wait until we get test results back and she examines her. Ashleigh is already on 18 different medications. Some of those are starting to effect her kidneys. Which brings me to more med. changes. Dr. Trigg wanted to increase Asheigh's FK506 because Ashleigh has a little Graft vs. Host by her eyes. Dr. K had us decrease it because the FK is hard on the kidney's. We are going to treat the Graft vs. Host disease with creams. We also cut her acyclovir to every other day, that too is hard on the organs. Dr. Renwick is going to set up the MRI of the spine for next week. I will let you know what happens with it.
When this journey started I never thought I would make some of the choices that I have. It was easy for me to sit back and judge others and say I would never do that. Now I realize that I will, I have. Nothing matters more to me than saving my daughter. She is amazing and I thank God everyday for her. She has touched so many hearts and has become an inspiration to so many, including me. Next time you hear the song In My Daughter's Eyes, think of Ashleigh, that explains how she makes me feel. She is my gift from God, my savior and my Hero. Thank you for your continued support, love and prayers you have given our little Miss Ashleigh Ryann and our family.
Well as if this week hasn't been bad enough...Dr. Trigg called today, on a Sunday, so I knew it wouldn't be good news. Thursday Dr. Renwick ordered urine studies including a culture. Well, it grew a bacteria. We switched antibiotic for a week and will retest. Should I recap this week, Ashleigh has 3 more compression fractures, taking her up to SIX. Her kidney functions are going higher, doubled since we left Duke 3 weeks ago. And now, a infection, her first since starting this journey. In a way, we are lucky she has done well with infections. I guess this week has been full of bad news, I just want her to catch a break.
Good-night
Thursday, February 12, 2004 10:34 PM CST
I really don't know where to begin. It started out as a okay day and some time into it I feel like we fell off a cliff. Well I guess the beginning would be a good start. I took Mackenzie to school, came back home, picked up Ashleigh and headed to duPont for our weekly clinic visit. She had her blood drawn, IVIG started and feeding therapy. All went well, she even spit on Sara during therapy, squash in the face. My girl has attitude. Dr. Renwick came in and we talked about some concerns I had with Ashleigh shaking, jumping and fussing more. We talked about it being gas but she said we could do some test just to be sure. The took some urine and ordered some x-rays. She left. Dr. Trigg came in and told me that Ashleigh kidney functions came back higher but he wasn't concerned. Last week they were .8 this week 1.0. I know it isn't that big of a jump but compare it to the pass 7 months when she was at .5 to .6, she has doubled her normal base line. I started to panic but hey there is more to come. Dr. Trigg and his assistant Dr. Bond came in and asked me if Ashleigh has ever fallen off of a bed or something. Then Dr. Bond asked me if I have ever grabbed Ashleigh's arm real hard. I felt like saying yes, I transplanted Ashleigh to save her life so I could abuse her. I didn't but my goodness if I wasn't in shock I think I would have. Dr. Trigg thought that because of her steriods and lack of mobility she has more compression fractures. Two more in her back, for total of five in her back and now one in her upper arm. Hence, have I ever grabbed her. I was so upset, I just wanted to get out of there, I felt like I couldn't breath. On my way out, I stopped and saw Dr. Renwick. She was upset about the fractures too. We talked and assured me that she does not believe that I could ever hurt Ashleigh. By the time I got home, she had spoke to a doctor about Ashleigh's bones, he made a couple of suggestions. I talked to Sue and she agreed with three so far. We doubled her dose of vitamin D. He also thought of some blood work that he would like to have done, some other test and one other kind of medication. Sue is going to talk to Dr. K about the medication. Sue also, assured me that the compression fractures happen, especially to metabolic kids on steriods. Dr. Renwick also talked to a doctor about Ashleigh's kidney functions. He too was concerned. I talked to Sue and she is going to talk to Dr. Kurtzberg about it. I wait for alot of answers in the morning.
I am really tired and need to clean, yet at midnight, because I was at clinic all day, we have therapy in the morning and my house looks like who did it and ran. Good night.
Tuesday, February 10, 2004 9:01 PM CST
Okay, we got some great news to share with you all. Yesterday a nurse came out to see if we needed a nurses aid, he thought we didn't because in his opinion Ashleigh' requires too much care and we should have a LPN. Now part of me said I can handle it, I have been doing it but then reality set in and I realized I need a break. I need to go food shopping and have some sort of fresh air on my face. An aid would not be able to give Ashleigh' medications or feeds because Ashleigh has the G Tube. So the nurse is putting in a request to our insurance company and doctors for a LPN. Our insurance also doesn't cover aids, only nurses. So it is even better because we won't have to pay for it, insurance will. On the even better news...today our new Physical therapiest came out, her name, I believe is Debbie, how terrible is that I don't remember. Well because it was so exciting...great news here...She worked with Ashleigh for about a half hour just to get a feel for her needs. Ashleigh responded so well, she opened her eyes and responded to noises and lights. She also sat in a slumped position without falling over. Whooo-hooo! < as Mackenzie would say. I am so excited to have Ashleigh back in therapy. She does so wonderful in her sessions. She really seemed to like the new therapiest, she responded well and didn't fuss much. Now as of now, nothing is scheduled for Wednesday yet. Thursday we have clinic and feeding therapy. She will also get IVIG through her port in clinic. I have tried to contact the new neurologist but didn't have much like setting anything up. He does not usually see outpatients at the hospital and I dont' want to take Ashleigh into his office without an immune system. Dr. Kurtzberg and Dr. Renwick both said we will try to work it out that she doesn't have to but if they can't we can be the first patient of the day and go directly to a room. We are also waiting to see what the x-rays show at the end of the month to see how aggressive we can be in therapy. The therapiest wants us to get a 24 inch yoga ball, but we have to wait until our Duke visit in two weeks, not that I am counting down. It is actually getting better being home. I guess we are settling in somewhat. Last night we went to the movies and dinner with friends of ours. It is the first time in 9 months that Howard and I went out together, not counting doctor appointments. We went to see Miracle. It was wonderful, we are both hockey fans, so we enjoyed it. We had a good time. It is different though. Conversation is hard, the men talked about military stuff. It was hard for me because my life is Krabbe, chemotherapy, transplant and so many children dieing. They are the things that I talk about. I have to find some sort of balance in my life. Right now they are the things that matter to me. Ashleigh is my life.
Mackenzie is back in school. I talked to her teacher today, she felt that Mackenzie is were she should be for her age in education. She seems a little unsure of herself in her motor skills and socially. I think because she was so restricted at Duke. She saw transplant kids, who don't have the energy or are too sick to play. Except for Katie, Ryan's sister. Ryan transplanted 2 years ago and was at Duke for a week during his studies. And of course Elijah, who she loved. He had late on set Krabbe and transplanted without symptoms, so he played with her. He left in October to go home and is doing very well.
Two children I have been following has passed away, Alex and Conor became Angels last week, please pray for these sweet boys and their families.
Emma is new to 5200, she has MLD and has begun her transplant conditioning this week. Please pray for this beautiful little girl. I have not met her yet, but I do hope to at the end of the month. Her web site is:
caringbridge.org/ca/mcgregormld
Please send her lots of love, support and prayers.
Also another family who is on 5200, Trevor and Ross are brothers who have MLD. Trevor is about to go have his second transplant. Ross is doing well. Please remember these boys in your prayers.
Thank you for your love, support and prayers. You have all been incredible. Thank you just isn't enough.
Saturday is Hunter and Jim Kelly's birthday, please remember them on Saturday. Saturday is also Hunter's Day of Hope, please remember Hunter, Ashleigh and all of the children fighting this terrible disease.
Friday, February 6, 2004 11:50 PM CST
Today we had Ashleigh's suctioning delivered. It is something that we are just going to have for securtiy. She doesn't require it, every so ofter she does get some stringy saliva and I have to put a glove on and pull it out of her mouth. The suctioning will do that and leave less chance of infection. We are meeting with Ashleigh's occupational and physical therapist on Monday. We are also having a nurse come out to do an evaluation, to see if nursing is needed. Every other family we know has one so hopefully we will get one two or three days a week. We are still waiting for deliveries of supplies, but we are headed there. Ashleigh had a good day, except at dinner time, I think she knows as soon as I put dinner on the table. She starts fussing. She sat at the table in her kid kart. I love that thing. It really allows her to be join in with us. Mackenzie is spending Saturday night at my moms, so me and Ashleigh are going to just cuddle all night. I can't wait. Thank you for your support through this transition home. It has been more difficult than I ever thought. Good-night.
Thursday, February 5, 2004 8:21 PM CST
First let me clear up me trashing on the insurance company, they are being wonderful and super helpful. I was givent the wrong information. Anyway, it is all cleared up and we should have our homecare and therapies set up by the beginning of next week. We did get to have feeding therapy today in clinic, which was very exciting. Ashleigh closed her mouth around the spoon, took her food, chewed it and swallowed. Yeah-hoo! She is so amazing. Some other things at clinic were not so wonderful. Ashleigh's liver and kidney fuctions were a little high today. We are going to monitor them for the time being, but please say a prayer that they will come back down to normal levels by next week. Her weight was a little on the high side, so we are starting her on Lasix every other day for a week to try to get some extra fluid off of her, this can go both ways. The fluid needs to come off to protect her lungs but could also be a little risky because of her kidney functions. For now we are just going to play it really careful. Some of her other test were a little off, but it isn't anything too serious. I have spoken to all of Ashleigh's doctors and they all agree on the plan of care for now. I know she is just keeping me on my toes again. HaHa.
Today is Angel Chloe's 3rd Birthday, please remember to send her a happy birthday wish when you say your prayers. Sadly, Chloe lost her battle with Krabbe. She is a cutie.
Conor has lost his battle with Leukemia today, next time you hear a Bon Jovi song, please think of this little boy. They were his favorite. Also, please remember him and his family in your prayers as they travel these difficult times.
I will let you know about Ashleigh's therapies and care as soon as I get more information. Thank you all for your support. Good-night.
Thursday, February 5, 2004 9:15 AM CST
First I need to say how sorry I am to my insurance company. It is not them at all. Now I really am out for blood and want to scream at the top of my lungs! duPont's out patient insurance person, is the one who wants all of this pre-determination. I called out case manager at Amerihealth, Allison. She said that we do not need pre-certification for out patient therapy, she continued to say that this woman at duPont insisted on it and didn't believe Allison. Next I was told that no one has even contacted out insurance about home care or therapy. I am now flipping. I have calls into everyone who is suppose to be working on this. Do these people even have a clue? I'll let you know how it all turns out! Off to clinic.
Wednesday, February 4, 2004 7:45 PM CST
Okay, I am ready to scream. I have already expressed my wish to be back at Duke, well now my insurance company of all people just made we want it even more!
Ashleigh was getting physical (2X a week), occupational (2X), and feeding (1X) therapies at Duke for months, both in patient and out. We have been home for two weeks and nothing, no therapies, no home care, no medical deliveries! Notta, nothing, zilch!!! Well today I find out that they are giving duPont a run around and want to "pre-determine" if Ashleigh requires these services. UMM, yeah she does. Now I am running low on supplies and more important she is starting to have some jumpy-ness and stiffness. Would they, the insurance people like us to go to Duke so they can pay all the out of network expenses. Do they know what a Krabbe child is like without therapy? I am so angry! First thing in the morning I am going to be on the phone with them, they are going to have one angry mom on the phone. I have already e-mailed Sue, Dr. Kurtzberg and Dr. Renwick about it. Oh wait, the best part is they said it will take up to 6 weeks to determine the care that Ashleigh will need. Well Mackenzie just came in and she colored her legs with markers so I have to bath her. She started school on tuesday, just twice a week to give her a break from our home. So she has school in the morning and I am now bathing her at 9 in the evening. Yeah, we are running mad. I will update after clinic and a nice phone call with the insurance people. Good-night.
Friday, January 30, 2004 10:28 PM CST
Sorry I didn't update yesterday. I am just so tired lately.
duPont is different, not in a bad way, it is just not the same. They were really nice. They are working on all of Ashleigh's needs, setting up home care and so on. At Duke, Dr. K did all of her care, duPont will have several different doctors involved in her care. Neuro (for her disease and seizures), ortho (for her compression fractures), transplant (for blood results, GvH issues, and infection related stuff) also general peds to over see all of her care and coordinate it all. Dr. K will still be very involved in Ashleigh's care, Dr. Trigg (duPont's bone marrow) said that all med. changes will be done through her. I was glad to hear that, I am sure he is a great doc., Dr. K said he was. But we have built a trusting relationship with Dr. K so we feel comfortable with her. I know we will do the same with Dr. Trigg in time. Dr. Renwick (general peds) was one of the doctors that helped dx Ashleigh, so we are so happy to have her on Ashleigh's team. She is so great, we are lucky to have her. We are still setting up home care, physical, occupational, visual therapies, home deliveries, and nursing care. Since Ashleigh won't require any "skilled" nursing we will most likely get a nurses aid. That is fine, I just need some kind of help. We do have feeding therapy set up, Ashleigh had her first post transplant session with Sara in the Bone Marrow clinic/unit on Thursday. Ashleigh was a bit sleepy, but did eat a little and had some strong swallows. I say post transplant with Sara because we had her before we went to Duke. I requested to have her again. She is very sweet with Ashleigh. I can't say I wasn't warned, it is much more work then down at Duke. Back here in reality life goes on. Down at Duke, we just lived in such isolation. Everything focused on Ashleigh, here I have all of Ashleigh's needs, plus a normal life. As much as I love being in my home, I would love to be back at Duke. There we were "normal", we were surrounded by families and kids just like us. Sick children, and desperate parents. The pain in our eyes weren't as noticable because we all had it. I feel like this nightmare should be over, I should wake up at this whole thing was just some bad dream that I couldn't get out of. Being home is also wonderful, it means Ashleigh is doing well. She has done so great. I am so thankful for that. So many families go home without their children and I am so lucky to have my sweet Ashleigh girl with me. I guess you can tell this pass week has been a roller coaster ride. I am so thankful to have the unconditional love and support of our families and so many of our friends. Even, those who we have never met. Thank you all!
Monday, January 26, 2004 1:39 AM CST
We meet Ashleigh's new doctor on Thursday, I am really nervous, I don't know why. Dr. K. recommended him, she has worked with him in the past and she said he is good. I just worry, I guess.
Some families have told me as soon as you get home reality hits, wow, they were right. Everything is coming down on me like a ton of bricks. As well as Ashleigh is doing and I feel like I can't do enough for her. I can't kiss her or tell her how much I love her and how sorry I am that this has happened to her. Jane, you were so right about the emotions that hit you when the storm settles. You are so incredibly strong, you have done this journey twice. Thank you for the talk before I left, it really helped alot.
I wish we were back at Duke, in our apartment, safe and so close to Dr. K and Sue. Wow, this is so much harder than being there.
I will update you all on how this week plays out, I start making phone calls in the morning for therapy, nursing, insurance, early intervention and so on. Hopefully everything will be open with this snow that we are getting now. 4-6 inches by morning.
Thank you all for all of your unconditional love, support and prayers.
Oh, I am still unpacking, we sure did come home with alot of stuff!
Saturday, January 24, 2004 7:45 PM CST
Well we are home! It wasn't too bad of a ride. The hard part was leaving Duke, Sue and Dr. K.
We arrived home to a greeting party, newly decortated home and a completely new life. We will adjust. It will be our beautiful life full of love, determination and lots of hard work. Thank you all for everything you have done for us. I will update as we start setting up Ashleigh's care at home.
Thursday, January 22, 2004 9:05 PM CST
On the eve of our departure from Duke, I sit and think of these past 7 months. Wow-I can't really get over anything that has happened. We met with Dr. K today to go over the care that is planned for Ashleigh, what her rules will be and following up at Duke. She asked us if we had any regrets about what we have done. Both me and Howard said no. We knew our options. We knew the risk. We are driving Ashleigh home free from Krabbe. Yes, she still has the effects of the disease but she does have the enzyme and she will not face more damage then what has already been done. She can only improve. We do have the risk from transplant to watch, the chemo, graft vs. host, the Krabbe is gone. Dr. Kurtzberg gave us a gift that could never be repaid. She gave us so much hope. She gave us life. She asked if we could like to be on a list that would have other Krabbe/leukodystrophy families call us before they transplant. We said absolutely, remember, we decided to transplant after talking to Debbie and Pam. I will do anything to help a family that is facing the same choices we once were. Transplant is not easy, but I don't think either way is. We made our choose based on hope. After we went over all of Ashleigh care and future we talked about a few things. Newborn screening, therapies and experiments that are being done, Hunter's Hope, and life. I wanted to thank her but no words seem to be good enough. I started to fill up to cry but I did control myself very well. Sue was also there. I sat at the table this afternoon with two of the most beautiful and giving women I have ever met. I hope they really know how much they mean to us and how much we appreciate what they have done for us. I love both of them with all of my heart.
I believe that Dr. K has saved Ashleigh, modern science will improve her life. Ashleigh will continue to amaze us and she may not ever be "normal" but she is so perfect. I have Dr. Kurtzberg and her team at Duke to thank for that.
In the morning we will begin a new chapter to this journey, we thank each and every one of you for your love, donations, support and most of all prayers you have given us, especially Ashleigh. With Love and Hope to you all.
Wednesday, January 21, 2004 11:39 PM CST
My last page was getting to long so we had to start over.
Tonight we had a farewell dinner with Kelly (Angel David's mommy and she also works for Hunter's Hope), Degan, James, and Lori. Angelique, Michel and Dylan were not able to make it. Connie, Ashleigh's best buddy came over for a bit also. Ashleigh had PT and OT today. She did well. Not really much happened outside of that. I called some pharmacies back home to locate some of the medications that Ashleigh needs. Well, I haven't. CVS and Eckerd both said they couldn't get FK506. Bill (Howard's step father) knows knows someone who owns his own pharmacy so he is contacting Duke about making some and on the recipe for FK. Hopefully is able to make them.
Here I go...I would like to thank Hunter's Hope for the gifts they have sent us, the support they have given us and for having Kelly here to help us. Back in September Ashleigh was having problems breathing so she was sent to PICU. I was here by myself. I called to have Howard come down and one of the nurses from 5200 called Kelly. She stopped what she was doing and come to my side. She has brought the families here together, so we did not have to travel this road alone. She is a sweet angel on earth and I thank her for everything she has done. Lisa, Ashleigh's feeding therapist, wow, she took Ashleigh to a level I thought was gone. She has taught Ashleigh to eat off of a spoon. She has her working on using her hands and pushes Ashleigh at each session. Thank you for having faith in Ashleigh's abilities. Nurses on 5200, thank you so much for all you have done. Ordering me food, keeping me company and all the little things that really were not in your job discription. Not only did you talk great care of Ashleigh, you helped me through this. Your kindness and gentle words to Ashleigh were so sweet. Thank you for believing in what you do. Thank you for saving babies. The Krabbe families, you guys are awesome. I could ask anything and you all come together with information and support for each other. Dr. K. has told me she has never seen families bond like the Krabbes'. Each time I needed you, you were there. Thank you. In all this time there has been so many people that have come into our lives, so many different children. Sadly, some of them have become angels. Please take a moment to think of God's littlest angels and pray for them and their families. I can't possibly mention everyone who has supported us. Please know that you are appreciated and loved very much. Thank you. 2 MORE DAYS! We meet with Dr. K and Sue for one last time before we go home. I will fill you in and try to express how I feel about these two ladies. I warn you though, I have tried to write Dr. K. seven times now, and have not been able to. How do you tell your hero thank you for saving your baby? I don't think I can express half of what I feel for her.
Tuesday, January 20, 2004 11:17 pm
As this week unfolds I am going to continue to write the same page. Please just stroll down each day. There are so many people who have come into our lives, people that have come to mean so much to us. With our discharge coming up I want to mention some moments and some odds & ends that have affected me, Ashleigh and our family.
First Ashleigh's day. She was a little sleepy today, she did have PT, some stretching and range of motions stuff. Not really anything else. We have our big clinic day in oh about 8 hours.
Ashleigh has a beautiful quilt that was made for her by Quilts of Comfort. I love it, she loves it. Lauren Marks (her husband is in the military with Howard) became a wonderful friend. She has called me, e-mailed, and had the quilt made for Ash. Her support and kind words have carried me through many days of sitting in the hospital room. Thank you so much, Lauren. Carolyn Wyman...my personnel pep squad. Thank you so much for being my cheerleader. On so many days, I was down and your messages and e-mails have lifted me. Thank you for the prayers for Ashleigh. You are so great to us and all the caringbridge families. Thank you for your faith and support. To Howard's military, wow, you guys have been great. I could never really express how thankful we are for you, true American heroes. Now our family... I can't really single anyone out. You all have been so great to us. Our kitchen I hear is beautiful, Ashleigh's new room is coming along, Kenzie's room, well okay the whole house, the shopping, cleaning, errands, support, talks, and the list can go on. Thank you so much for everything you have done for us. You know who you are and so do we...and we appreciate everything you have done and are so thankful we have you for our family. To each of you who come to this site, you have carried us through so much. Thank you for all of your support and kind words. On Wednesday I will try to fill you in on our feelings about Duke, Hunter's Hope, other transplant families, and our fellow Krabbe families. Thank you.
Another long day at clinic, but our last, well okay for a month at least. I woke up late today so we got to clinic late. Kelly went to pick Howard up at the airport and he was meeting me at clinic. I have both girls with me and one of the nurses game me a hard time for having siblings in Fish Tank Room. Well I am here by myself, I have two kids, what am I suppose to do with Mackenzie. I have been doing this since October. Today it was a problem, not only that but everyone including this nurse and Dr. K know that I have had Mackenzie with me this whole time. So she just set my mood for the day. Anyway Ashleigh...she did so great. Dr. K was happy with her skin and breathing. We took her steriods down a little and took one dose of one of the blood pressure meds. away. She also only going to get IVIG once a month now. Nothing else for now. Thursday we have a big meeting with her to go over everything about home. Yes home is in 3 days.
My emotions are running crazy, there are so many people who have reached out to us, I can't even think of them all. Not only that I could type for the next 12 hours and not cover everyone. Please don't get upset if I don't mention you personnally, everyone of you are so special to us.
As I think of the people who have helped and supported us through this two families come to mind right away. When we started our pre transplant studies, we got a really bad report form a doctor who felt that we shouldn't do this. We were devasted. One night when I was here alone in the hotel, I called them. Pam Kristoff (Ryann) and Debbie Prichard (Angel Noah) played such a huge part in getting us to transplant. To me they helped us save Ashleigh. Never did they say oh do this, you have to. It was this child is this far out of transplant and they regained these skills. It was hope, hope that we needed. They gave us a gift that is one of the most powering emotions that one could give us. I will always be grateful to them. All we needed at that time was HOPE.
Our community...the business's and people who supported Ashleigh's fund raiser. WOW! Seeing that place so full touched my heart so deeply. I never expected such an out pouring of support. Thank you so much for you donations, hard work and support that you all have given us.
All the families that we have met on this journey, fish tank, 5200, caringbridge sites. Thank you for your kind words, support and pick me ups. You all are amazing, your strength and courage as you face each day, as we face each day, is absolutely incredible.
So many people have told me how much I have changed. I have. I am proud of that. It is a special gift that Ashleigh has given me. I believe I am a better person because of my daughter. She has opened my eyes up to so much. Everyday I am thankful for her.
I will write a new page next time. I warn you now, it will be a long one...
Good-night.
Sunday, January 18, 2004 11:07 PM CST
The countdown continues...
I packed the kitchen, made piles of things to be donated, piles of things to go home and still a whole lot more to go. I was warned that you really build up alot of stuff here, that is really an understatement. We are never going to get all of this home. Howard is a master packer, I might just stay away while he is doing it.
Ashleigh has been doing wonderful. She hasn't had any new Graft vs. Host rash. She isn't retching anymore. However, you all must know be now she does like to keep us on our toes. Last night I feel asleep watching tv, well I didn't put her pulse-ox on. I woke and didn't see her chest moving. I touched her and she still didn't startle. I grabbed her and she took a deep breath. Well she has done it about four times today. I am waiting to talk to Sue or Dr. K about it. Everything else has been wonderful. We do have a busy week coming up. Besides all of this packing, Ashleigh has physical and occupational therapy on Monday, Tuesday we have clinic and she is due for IVIG, Wednesday Ashleigh has both PT and OT again and then we are having dinner with the other two Krabbe families here and Kelly from Hunter's Hope. Thursday we meet with Dr. Kurtzberg and Sue to go over all of our instructions for home and our scheduled return to Duke (the last week in February). Friday we have to get checked at clinic and then we are free to go. YEAH! I promise to update after our Tuesday visit with Dr. K.
Thank you all for everything you have done.
Friday, January 16, 2004 2:10 PM CST
The count down to HOME is on. We are meeting with Dr. K and Sue on Tuesday in clinic. They said there is alot to go over so we will also have a meeting with them on Thursday. We will see Sue in clinic on Friday and then we will be cleared to leave at anytime. Well, not really, Dr. K has to know when we will be seen by a doctor back home. That is still being worked out. I did talk to one of Ashleigh's feeding therapiest back home, she can't wait to see her and said she would make time to see her in the bone marrow clinic at duPont. I am really nervous about meeting a new team and setting up everything. They really spoil us here at Duke.
One to Ashleigh...
She has had a great couple of days. She got her last "extra" dose of pain killers on Tuesday night. I changed her bandage, it was still leaking a little, so I put bandaids on them. She also has been much comfortable. Not as much jumping or crying. Awake looking around. Today she had her last feeding therapy session here, Lisa is so good with her. Today Ashleigh ate applesauce, green beans, lemon juice, and ice. She also now has permission to have popcycles. The lemon, ice and popcycles are to produce saliva, and Ashleigh using her mouth. She did really good today, alot of sucking and swallowing. She hasn't had any new Graft vs. Host issues either. I really can't tell you how well she looks and acts. I think that is helping me with this whole transition.
Mackenzie had a meeting with the psycologist twice this weekend. Apparently she is afraid that monsters are coming to take Ashleigh away, and hurt Mackenzie too. She is associating the Krabbe with monsters, I think. I know this has been so hard on her. She has been so good through this, but it must wear on her.
I have sat down to write Dr. K a thank you letter, I just can't find the words to tell her how much she has done for us. She is amazing, so dedicated to save lives. I am going to vote her as woman of the year for Opera. I think she will kill me, she doesn't make a big deal about what she does. Like I said, she is amazing.
I know alot of people want to come see us when we are home, please call first and we may be able to set something up. We must be very careful, Ashleigh's immune system is still very, very low. Speaking of, her immune study came back crazy, so we will retest it in February. We will be back at Duke the last week in February for her six month post transplant studies. I can't believe it has almost been that long. Thank you all for the support you have given us, you have really carried us down this bumpy road.
Tuesday, January 13, 2004 9:06 AM CST
Ashleigh did so wonderful yesterday. I took her into the operating room. They hooked her up on the machines and they put her to sleep. A nurse escorted me back to the waiting room. Less than an hour later, Dr. Skinner appeared and told us that he was finished. She had both central lines removed and her port placed up on her left shoulder. Sue came down from the Bone Marrow clinic and did her lumbar puncture while Ashleigh was still sleeping. Sue then came to the waiting room to tell us that her pressure on her brain was normal. Wonderful news. They also took some fluid to test the protein level in her spine. This is very important because children with "active" Krabbe have higher protein levels. That will take a couple of days to come back. Keep your fingers crossed that the level has gone down. A half hour after Sue left, they called us into recovery. Ashleigh was her sleepy self, but her monitors were high. Her heart rate was normal at 90 and her oxygen was at 98 They said we could bring her home. After they disconnected her from all the machines, I held her in the chair. She opened her eyes and looked around and went back to sleep when ever someone talked to her. She came home and slept with Howard.
Last night was not as easy. She was us crying and was doing alot of the shaking of her arms and legs. She continued to do it all night and still now. We kept a close eye on her bandages and temp. We are headed to clinic soon. She was going to have feeding therapy, but I think we will cancel that. She is going to see Dr. K and Sue. Because she had her IV medications on Sunday, we are only going to be seen today. They didn't want to access the port while she was still tender. Her next scheduled blood draw is next Tuesday. Mackenzie is going to have a playdate with the psychologist, Michelle. Mackenzie loves playing with her. I will update more when we get home. Thank you for your well wishes and support. We'll be home soon...
I thought since we didn't need to get IV medications that we would be in and out of clinic fast. Well we signed in at 12:30, we returned home at 7 tonight. Yes, we sat in fish tank, waiting room without a fish tank, for about 5 hours. Dr. K was happy with the amount Ashleigh had her eyes open and was moving her mouth and arms. Even her legs a couple of times. We increased her pain medications a little for a couple of days. I can take off her bandages and use bandaids were her lines were. We are on schedule to come home next week, most likely friday night or saturday morning. We will report to duPont the following week. We only have to go once a week unless something comes up or Dr. Tripp wants to see us more. We are also scheduled to come here once a month. When we come the last week in February we will do all her studies for 6 months post transplant. Which brings me to some disappointing news...yesterday Sue did a lumbar puncture (spinal tap) on Ashleigh during the surgery. The results today were not what we expected. Before transplant Ashleigh's protein level was 147, yesterday is was 250. We are not sure what is happening. Dr. K said it doesn't really mean anything right know, for us not to worry about numbers. Sue agreed, but also said she understands that we look at all these number (WBC, RBC, platlets, organ functions, chemical screenings) and now we are told not to look at numbers. Please pray that in February the numbers will go down. Thank you.
Sunday, January 11, 2004 5:38 PM CST
I guess little Miss Ashleigh is just trying to keep us on our toes once again. On Friday we drew blood to check her clotting factor, well Ashleigh's came back too high. Today she had to go to clinic for her IVIG and they gave her some Vit. K to help her with the clotting. They tried to draw blood directly from a vein instead of using her central lines, they got a vein on the first try. Which for those of you who know Ashleigh's history, that is impressive. They can never get a vein on her. Well todays stick didn't give enough blood for the test. If her clotting factor is too high then she can't go to surgery in the morning. They called Dr. K who request for them to run a test on her heperin levels before surg. Sue ordered the Vit. K. and e-mailed Dr. Skinner, the surgeon to get his imput. Hopefully we will get the central lines out and port placed.
Ashleigh still has streaks of blood in her bowel movements and she is still irritible at times. We want to see about making some med. changes this week and talk more about going home with Sue and Dr. K.
Last night I went out to dinner with Lori (Degan's mommy) and Angelique (Dylan's mommy). We then met up with two nurses from 5200 for some dancing. We had a good time. It was nice to have a little break. Thank you Amy and Erika for the night.
Tonight Howard is getting his break, he went to watch footbal with James (Degan's daddy) and Michel (Dylan's daddy). No nurses. I am glad he has some people down here who understand this and he has stuff in common with. He needs a break from working, driving and taking care of us.
If Ashleigh does have surgery we may be admitted to 5200 for the night just to keep an eye on her breathing. I will update from the computers there to let you know how everything went. Otherwise, I will let you know our new surgery date.
Ana, Angel Elly's mommy, has offered us Elly's bath seat. This will help Ashleigh during bath times. Since she can not sit up this will support her while I bath her. She has only had sponge baths because of her central lines but once they are out she can get in the bath tub. Also, she is going to use Hunter's stander. He just got a new one so we are going to borrow them. Hunter's Hope has an equipment exchange program so when Ashleigh grows out of these things along with her Kid Kart and any other equipment we will give it to them for other families to use. Some of this stuff is paid for by insurance and other things are not. Our insurance didn't want to pay for the Kid Kart so they won't go for the other things. We have to apply for a handicap sticker for the car and check into what New Jersey offers for early intervention. We also have to check into home health (deliveries of supplies), therapist and nursing. If our insurance won't pay for a nurse. It was recommended to us to hire someone to help us out. Care at home is harder, so I am told, because we have our regular life to tend to along with Ashleigh's care. Such as taking Mackenzie to school and doing activies with her, so shopping and erands. Ashleigh can't do those things. Some families recommended hiring a special education student from the local colleges.
Well, I better close for now. Please pray for Ashleigh to have her surgery and to return home soon. Also please keep Daryn and Alex in your thoughts. They are hitting some bumps in this very rough road and really need some prayers.
Thank you all for your continued support and prayers. Happy birthday to my sister in law, Mary.
I forgot to tell you, it was 70 here last week and then we had snow the next day. Crazy. I heard it is freezing in Jersey. It is pretty cold here but not as bad as back home...maybe we should stay here.
Thursday, January 8, 2004 10:33 AM CST
NEW PICTURES ARE FINALLY POSTED!
Well the count down is on. 12-15 days we should be on Rt 85 headed north. It is so exciting and yet so scary.
We have started packing. I am not really sure how we are getting everything home. Everyone has told us that it is amazing how much stuff you seem to collect while you are here. I agree. I had Howard bring down so much stuff and then with Christmas...
Ashleigh is doing wonderful. She had a cranky day yesterday and today she is back to sleeping. She did both physical and occupational therapy yesterday, she does so well. She really enjoys it. She has kept her blood counts up. She has only had platlets once and blood once. If it weren't for the seizures and compression fractures she really would have been home by now. Of course she does have the mild GvH but it is being controled with steriods and FK506. I guess I am just amazed by how strong she is and the courage and determination that she has.
This morning Haley left to go home, back to New York. Her family has become very special to us. Haley has Hurler (MPS). I have written about her and her family in the pass. They have helped me out when I am down here by myself. I wish them the very best with everything. They are going to set a web site when they get settled in at home, I will get the address to you as soon as they have it done. Please keep Haley in your prayers as she continues her healing from both her disease and transplant.
Kelly, Haleys' mom, last night was saying that it is so hard to write Dr. K a thank you letter. I have so many people down here to thank, I never thought of how hard it is to thank the people who have helped you save your child's life. Really are there words for that. Dr. K and her staff are true heros.
Of course all of you that log on to this site, signing in and giving us your support or just silently checking on our sweet Ashleigh...Thank you. Your support and prayers are priceless.
Tuesday, January 6, 2004 7:42 PM CST
Tuesday visit....Ashleigh did well, we all agreed that she is looking better. Her Graft vs. Host has cleared up again. We didn't make any changes with her medications. We again talked about going home. We are going to have her lines removed and her port placed next week and if all goes well we will be able to return the following week. So about 2 to 2 1/2 weeks we should be home. Ashleigh doesn't have any complications and we are just getting ready to go home. We are going to go to Dr. Trigg at DuPont Hospital for Children. Ashleigh will still have limited contact with people and she will not be able to go in public buildings. She will have therapy in our home and go to clinic once a week. I am so excited but yet so scared. I wish we could take the staff of Duke with us. They are so wonderful to us. There are some supplies that we have to get. A pulse-ox, a stethoscope, and we have to see about having someone come into our home to help me 2-3 days a week.
We have noticed Ashleigh using her arms more, especially her right. She even pushed the blanket away from her face and was fighting the therapist in one of her sessions. All three of her therapist thinks she is still with us mentally and will come out to us as soon as we can get her off of some of these meds. Hopefully they are right. I want to have her play with us, paint, and make a mess with Mackenzie.
Howard will update new pictures soon.
Thank you for all of your support. You all so wonderful and we couldn't of done this without you. Thank You.
I finally updated the photos. Take a look.
Friday, January 2, 2004 3:49 PM CST
Not too much is happening right now. Ashleigh's leg x-ray did show that there was not a fracture however her bones are extremely thin. She is already taken calcium and vit. D to help her build up her bones. Her right foot is a little larger then the left. We are not sure why. It isn't fluid. We are going to find out her surgery date on Monday. They will remove her central lines and place her port. Taking us one step closer to home. She had feeding therapy today. She did well. She likes her carrots and when Lisa (therapist) put a cheese puff in her mouth, Ashleigh raised her eyebrows up. She liked this different taste. She can't eat the puff, we are just trying to make her mouth work by giving her strong flavors. We started her back on Amlodipine, blood pressure medication. We took her off of Robinul, dries her sectretions. So some small medication changes. Howard's sister Diane came down so I wouldn't be alone for New Year. We had fondue and salads and some wine. It was nice. Quiet. Mackenzie stayed up for midnight. She went outside to bang pots. She thought it was great.
One of my favorite movies is the Diary of Anne Frank. I found this quote from her that I wanted to share with you all. "I keep my ideals, because in spite of everything I still believe that people are really good at heart". I read that and thought of all of you, family, friends and strangers who have come to support us. Your love, support and prayers have carried us through this journey. Thank you with all I have. Thank you just doesn't seem to be enough.
Tuesday, December 30, 2003 10:53 PM CST
Today was a long day at clinic. Ashleigh had two IV medications, Pentamidine and IVIG. They each take two hours and they can't run at the same time. So there was 4 hours. Ashleigh was examined by her Nurse Practitioner, Sue, who we love to death. She is so wonderful with Ashleigh. She is easy to talk to and makes me feel "normal" about my concerns. Thank God she was back this week. She was working on 5200 for the pass two weeks and she was sooo missed. She was concerned about Ashleigh's breathing and her reaction to having her right foot pushed on. She also noticed the amount of gas Ashleigh had. She talked to Dr. Kurtzberg and then they both returned to Ashleigh's room. Dr. K thought her breathing was not really a concern. Her lungs are clear. However, her foot was. In the morning we have to take Ashleigh for a x-ray of her right leg. They think she may have compression fractures in her leg now. She has 3 in her back already. They are caused by the lack of mobility and steriods. They could be the reason for the increased irrability. We also doubled her Ativan. I wasn't too thrilled about it but Dr. K said that it is more important to make Ashleigh comfortable to she gave me a choice of increasing the Ativan or Methadone. I picked the Ativan. Howard laughed at me because I am stuck on the first 4 letters of METHadone. If the x-ray comes back okay then it could be the nerve endings causing discomfort (caused by Krabbe) or just gas. By the time I left clinic today, I was drained. Ashleigh too, she came home and slept in her bean bag chair.
After dinner and bath tonight we had family game night. Popcorn and snacks and Mackenzie's games. We played Disney Memory, Monopoly Jr. and Connect Four. Mackenzie really beat me 3 times in Connect Four. Yes, she is 4 years old and kicked my butt. It was fun, normal. Ashleigh sat next to us. I pray that Ashleigh will be able to interact with us when we have these nights. We also have family movie nights, Mackenzie picks the movie. They almost always have a princess in them! Are you surprised?
Howard's sister is giving up her New Year's Eve partying so I don't have to bring in the New Year with just the girls. She said I need to have a real dinner and a glass of wine. I will cook if she brings the wine. Angelique, Dylans' mom, has me addicted to Dutch food, so I am going to make fondue and some Dutch salads. Well best wishes for all of you to have a healthy and happy new year filled with love and hope. Thank you all for all you have done for us. I love reading you messages, they are my line to the outside world. Thank you for the prayers and support.
Monday, December 29, 2003 11:46 AM CST
Ashleigh had a rough night, she cried until four in the morning. Her kidney test came back okay. I don't know what is wrong with her the doctors don't seem to be concerned. You know it is common for Krabbe children to cry. I feel like something is being missed. I don't know if it is because of all the children that have become angels or somethings is really wrong. I am just scared
Today, a woman called me from California, her 8 months son is in the hospital. His symptoms match Ashleigh's. His mother found Ashleigh's story on the internet and called me for advice. I told her to insist on a leukodystrophy test to be sent to Dr. Wenger. I gave her Hunters Hope information along with Dr. Kurtzberg. Right now they are saying he has CP, she thinks they are wrong. She is so scared. Please pray for this little boy. Also, if his mother reads this, I am hoping to hear from her again. I want to help her in anyway I can. So, Please call again.
Thank you for all of your love, support and prayers during these times. Please pray that I am wrong about Ashleigh and for all of God's new angels and their families.
God Bless.
Sunday, December 28, 2003 10:17 PM CST
This morning we were saddened with the news that Krabbe has taken another child. God called Leandra Frye home to Heaven. Leandra was diagnosed with Krabbe and transplanted two years ago. She was here in September for studies. We had dinner with them and Leandra and her mom, Stacy visited Ashleigh on 5200. Her passing is a reminder that there is really no peace in this war. Please remember Leandra and her family in your prayers. caringbridge.org/in/leandrafrye
Sunday, December 28, 2003 9:37 AM CST
Okay we are going to try this again. I just finished updating and I hit the wrong button and erased everything.
Ashleigh had a bit of a rough night, she seemed to be uncomfortable. Her repeat kidney test didn't come back yet. I took the blood to clinic yesterday and while we were there I had Shelley, the Nurse Practitioner take a look at her. Friday night, Ashleigh developed a rash all over her body, front and back, head to toe. She has had this rash on and off, but we had is under control. One Tuesday we took Ashleigh off of Solumedrol, her IV steriods and put her Orapred, oral. All steps in getting her central lines taken out. The switch in the steriods caused a new Graft vs. Host rash to appear. Shelley talked to Dr. K and they decided to triple the amount of Orapred we give her. GVH on the skin is common and not really dangerous, however if it turns into the body and enters the organs that could be extremely bad. For weeks Ashleigh has been retching during her feed, having increased bowel movements, and more irrability. With her new rash and the kidney test being off, I am getting worried about the GVH being inside. Everyone that has treated Ashleigh in the last two weeks thinks she is doing fine. I might just be scared.
Over the past week, 3 children have earned their wings, please pray for Adam, Nicholas and Max, along with their families as they face these difficult times.
Ashleigh is crying...I'll update more later.
Okay, I'm back.
Tuesday we see Dr. K and our regular Nurse Practitioner, Sue. Hopefully, they will put my nerves to rest.
I also have a special request for alot of prayers for Daryn Jackson. Daryn transplanted down here at Duke for Krabbe. He is in the hospital back home and really needs our prayers.
Thank you for all of your support you have given us. You all have been amazing and we thank you with all of our hearts.
Friday, December 26, 2003 6:34 PM CST
We hope you all had a wonderful Christmas.
We had a nice, relaxing day. Mackenzie woke up at 8:30 and said she just knew Santa had come. She opened one of her presents, then one of Ashleigh's. Each time she opened one of hers she would say "just what I always dreamed of, Santa knows everything". She would take Ashleigh's present to her and show "little sister" what Santa brought her. Mackenzie is such a terrific big sister. We played games, and barbies for a while. Kelly from Hunter's Hope came over for a little bit. Then Deagan's parents, James and Lori and Dylan's parents, Michel and Angelique came over for dinner at 4:00. We had snacks and talked for a while, watching football. We had a Holland meal that Angelique prepared. Salads and fondue. It was incredible. Nothing was rushed or hurried. We finally finished eating at 10:00 at night. Talked for a while more. It was a great evening, even though we were all a little sad from being away from our homes and families, we all agreed that it was wonderful being with each other.
We didn't have to go to clinic today, just drop blood. Ashleigh's kidney test seemed a little abnormal, but we are waiting for other test to come back. They are not concerned with it yet. She does have a little Graft vs. Host on her skin, most likely because of changing her solumedrol to oral. Tuesday we hope to find out about taking her central lines out. Home should be around the corner.
Please keep Daryn in your prayers, he is another Krabbe child who just left Duke a couple of weeks ago and he is having some complications from transplant. I don't know how serious yet, but he is need of some prayers.
My sister, Laura and her family were suppose to come down today but two of her children have fevers and are a little under the weather. With Ashleigh not having a immune system, any one who lives in their house could not come here. I am a little sad, I was looking forward to having company. But we could not take the chance of Ash picking something up.
Thank you all for your cards and gifts that we have recieved. I love reading messages and cards, it takes me to the outside world. Also, thank you for the support, love and prayers over the past 6 months. It is hard to believe Ashleigh is 121 days post transplant. Thank you.
Monday, December 22, 2003 11:15 PM CST
Wednesday,December 23, 2003 4:16am
The news below is wonderful, I wasn't ready to take it off yet. Ashleigh's liver study came back normal. They think the increased crying is caused by pain. We made a few med. changes and that was about it for clinic. I was home by 2:00 waiting for the other moms to get home so we could go out shopping and for dinner. It was a ladies night out. We went to Applebees for dinner and went to Target. It closed at 11, so we went to Super Walmart. That turned out to be great because we did all our food shopping for Christmas dinner and we have less to do Christmas Eve. We are going to have dinner with Deagan's parents, James and Lori and Dylan's parents, Michel and Angelique. We are having a custome in Holland (Dylan's homeland) fondue. YUM! We are all splitting the work and the cost and we will celebrate at our apartment. It is kind of last minute because we weren't sure if we should because of all the viruses that are going around. At clinic today Dr. Staba cleared us all to get together.
Hunter Kelly is out of the hospital and doing well. I recieved an e-mail a couple of hours ago with the great news. Alex is still in need of lots of prayers. His mom is having a hard time with the nurses in PICU, we had the same problem. One asked her if she thought about when enough is enough. There is never "enough" in this fight. They are so judgemental of our love sometimes. Don't get me wrong we had some wonderful nurses in PICU, some well, weren't too supportive. All the night ones were really nice. I think it is also alot of stress on the parents so there just isn't any good over there.
Merry Christmas to you all. Enjoy your family especially the children for they are Gods' gift to us.
Please remember the transplant families down here and all of the Krabbe families this Christmas. Also, our troops who serve our country. The true heros of this world.
****************************************
Howard brought down some mail yesterday. Mostly statements from the insurance company. I went through them quickly last night, but one paper caught my eye. The letter head was from Dr. Wenger's lab in Philadelphia. He is the doctor that test for Krabbe. Ashleigh's 100 day post transplant studies came back. Wow, my heart dropped into my stomach. Everything that we have done in the past 6 months will be in that letter. Ashleigh 's gangliosidosis enzyme was 4.6. At the bottom of the page was the date 12/5/03, on the line that said Diagnosis: NORMAL GANGLIOSIDOSIS ACTIVITY. We were afraid to get to excited incase we were reading it wrong, so today I took Ashleigh to clinic (I will explain why in a minute) and I asked Dr. Martin and he confirmed it. Yes, Ashleigh has the enzyme to break down the poisons in her brain. She is on her way to a wonderful and glorious recovery. Thanks be to God. The word normal is something we rarely here. What a wonderful word! She still has a long road ahead of her, infections could still be deadly, she does not have a "normal" immune system, she has to repair the damage done to her brain. Any nerves that have been killed will not be able to repair. The wonderful news is that Ashleigh will not face any farther damage. This Christmas we celebrate our Lord, our children and Ashleigh remarkable transplant thus far.
We went to clinic today because Ashleigh has been extremely cranky and we became concerned with it. Tomarrow we will draw blood to do a function test on her liver/pancreas. If this test comes back bad it could be extremely dangerous for Ashleigh. Dr. Martin is leaning toward gas or back pain from her compression fractures. We increase her baclofen to help her with the back and we are going to give her tylenol opposite motrin. She can have motrin now because her platlets are 248. She is 117 days post transplant. Her counts have been great. Her hemoglobin is 8.5, and white cells are 11.7. She has only recieved transfusions twice, once for platlets, once for red cells since becoming an out patient on September 27th. That is great. I also thought I would update you on her list of medications.
Acyclovir 2.5ml once a day
Amlodipine 1.25ml once a day
Ativan .2ml twice a day
Ativan .4ml once a day
Baclofen 7.5ml three times a day
Bicitra 5ml three times a day
Calcium 5ml twice a day
Drisdol .05ml once a day
Enalapril 2ml twice a day
FK506 1.8ml twice a day
Methadone .4ml twice a day
Omeprazole 5ml once a day
Poly-vit 1ml once a day
Robinul 1.25ml twice a day
Simethicone .3ml every 4 hours
Solumedrol 1ml twice a day **IV, given @ home
Topamax 1 1/2 pills twice a day
Trimox 1.2ml twice a day
V-fend 1 pill twice a day
Vioxx 4 ml once a day
GCSF given in clinic only if her
white count drops below 4
IVIG given in clinic once a week
Pentamidine given in clinic once a month
Col. Butt Cream diaper rash
Hydrocortisone twice a day
Protopic twice a day
Motrin 5ml twice a day
Tylenol 1.6ml twice a day
She also recieves Occupational, physical and speech therapy twice a week, and doctor appointments at least twice a week. I also found out that when we get home, I will have a nurse a couple of days a week to help with Ashleigh's care. Here I don't have that.
Well more importantly, we recieved a wonderful gift today. Nothing could be better then finding out that Ashleigh has the enzyme. What a beautiful day.
Hunter Kelly is improving and expected to go home tomarrow! Way to go, Hunter. Once again you are amazing!
Please pray for Alex, he is still struggling in PICU.
Also please remember our troops and the men from Howard's unit who are about to leave their families to serve our great nation.
We have so many people to thank, Dr. Kurtzberg and her wonderful team of doctors who have helped us save Ashleigh. Sue Woods, Ashleigh's Nurse Practitioner, her patience and care is beyond her duty. All of our nurses on 5200 and clinic. Our therapist, Trish, Cathron, Monica, Ellie and Lisa for pushing Ashleigh. To Kelly, Davids mom and Hunter's Hope employee, for your kindness and help during this very rocky road. Our families for the support, love and help. Without you we could not have done this. To Congressman Rob Andrews for his interest in fighting Krabbe and other Leukodystrophies. To our friends, family and strangers who have stood by us with your love, support and prayers. To Lauren Marks, an unexpected wonderful friend to me. Thank you for the beautiful quilt. To Carolyn for your prayers. Our fellow Krabbe families, you are incredible. To the Jim and Jill Kelly, thank you for sharing Hunter with us all. Hunter you are an inspiration! Our list can go on...forever. Thank you all. Merry Christmas to each of you!
Good Night.
Sunday, December 21, 2003 6:22 PM CST
Please add Adam Kindell and his family to your prayers, Adam earned his wings this morning, as his mother held him tight. He fought a tought battle and his little body was so tired. He is now healthy and free from his leukemia.
There is no new news on Jillian and Alex. Please keep them in you prayers as well.
Hunter Kelly is showing some improvement. The Kelly's are hoping to have him home for Christmas. What a special Christmas is will be.
Ashleigh has had a better day. She did not fuss as much. She did have some crying after her 4:00 feed. Ashleigh has slept most of the day. Mackenzie and I did some Christmas crafts and crazy dancing.
Thank you for you support, love and prayers you have given us and the other families battling diseases. May God be with you this Christmas and always. With love and hope to all of you.
Saturday, December 20, 2003 6:02 PM CST
I was just watching a St. Judes special. Maybe not the best show for me to watch, but it is a reality of what our lives have become. My daughter is just like these children. Most of them have a childhood cancer. If they survive their treatment they will have a normal life. Their fight will be hard and long. My prayers are with each of the children that have been effected with such horrible diseases. Ashleigh's quality of life is still unknown. We beleive she will know us, she will communicate with us in her way, she will use her arms. We pray she has some use of her legs and will be able to without support. We pray for medical science to discover another miracle. I say another because Dr. Kurtzberg has been our first.
Today, someone told me that I have changed since I have been hear. I have to smile, yes, I have changed. I have opened my eyes to so much more in life. My children are such a special gift. I would not give up one moment with them for anything in the world. I will beg for one extra minute with each of them. Howard, Mackenzie and my life has changed forever. Ashleigh has been an eye opener to us, what really matters in life has become so much clearer. As much as we would love for her to be healthy, she is here for a reason. Her fight is not without meaning. I know alot of people have been effected by her and her life but they can walk away from Ashleigh and their life is normal again. Ours will never be normal. I know their hearts ache, but not in the same way as ours does. They can say what they would do if they were in our place, but until they are here, they do not know. I can say I was one of them. I remember a couple of years ago, I saw Jim Kelly on TV with Hunter. I turned the channel. When Ashleigh was diagnosed I wished I watched that interview. I also said, I didn't want to transplant Ashleigh, she was not going to be a science experiment. She is just that. I said I would not take any extreme measures to keep her alive, I will fight to the end for my baby. My opinion on "quality life" has changed. Ashleigh may not see things the way we do, she may not react to them the same as we do, but she will see and respond in her own way. Howard and I, as her parents, will know her responses. Hunter, Lucus, David, Dylan, Deagan, Ryan, Jason, Mitchell, Kyle, LeA, Ashleigh and the list goes on, goes on too far but each of these special children are a blessing for what ever amount of time we have them. I don't think unless you have walked in the shoes that belong to a parent of a sick child you could not understand the feeling and emotion that runs through every inch of our bodies. Don't get me wrong, I wouldn't want this for anyone. I would rather not know this myself. I remember looking into a frosty window and saying I would never let my child live a life like she is going too. The frost has melted away, now my child is just going to live life to the fullest of HER ability and I will do everything I can to make that life as comfortable and happy as I can. That is what a parent does for their child. Sorry, I am rambling, I just realize I am in a happy place in myself. Yes, our life will be hard, but it will not be without joy and love. Isn't that matters? We would not give up on Ashleigh, nor would any parent, our fight is long and hard but we do have our rewards, some are harder to find but they are their somewhere.
Ashleigh has slept most of the day. The clinic called to increase her FK506. Her levels where a little low. We are going to have feeding therapy on Monday because of the holiday next week. Monday will be a busy one, she has all three of her therapies.
Thank you for your love, support, and prayers. Thank you for your kindness you have given to us. May God be with you this Christmas season and always. Give thanks to God for the joys in your lives. We thank Him for choosing us to care for Mackenzie and Ashleigh. We are so blessed. Merry Christmas
Please say an extra prayer for Hunter Kelly, Hunter is in PICU. He continues to be a strong soldier in this Krabbe War. Also Alex and Jillian are in PICU, please remember them and their families are they continue this fight.
A while ago I asked for prayers for Howard, but I couldn't say why. Some of the men in Howard's National Guard unit have been activated to go to Iraq. Please pray for their safety as they protect our freedoms.
Friday, December 19, 2003 3:14 PM CST
Once again, it has taken me a while to update. I am not sure why, I have alot of emotions going through me and I was not sure on how to express them. Well, I have decided to let you all hear them.
First, Mackenzie recieved a birthday and Christmas present from very good friends of ours. Ashleigh did not recieve anything. This really upset me because they have bought for Ashleigh in the pass and now they didn't even acknowledge her first birthday. A day we weren't even sure we would have with her. I feel like calling to tell them that Ashleigh is alive, she made it through her transplant.
I also think that with most people Mackenzie is a second thought so maybe what they did was fine, but not even a card! Alot of you have asked what to get Ashleigh, honestly she doesn't need anything that can be bought. Instead we are asking for people to donate to Hunters Hope for Krabbe research in honor of Ashleigh Ryann Gwin.
Hunters Hope
P.O. Box 643
Orchard Park, NY 14127
huntershope.org
My mom has always told me that God puts us on this earth and He has a time for us to return to him. Whether we are watching tv or jumping out of air planes, if it is our time, then that is when we will go. Well, whether we transplant our children or not, God has the time they are going to take them. As parents of terminally ill children we are trying to improve their quality of life and make our children comfortable. We are fighting a battle. Medications, oxygen and treatments are not us being cruel or selfish. So before someone judges these parents, they should try walking in their shoes. And no child lives too long, they are our special gifts that are here for as long as He says they are.
Okay, my next complaint on my venting list is Howard's work. They can make me scream. Not all of them, actually most of them have been wonderful to us. Howard is just being punished by one person for taking time off to be with Ashleigh. I don't know if this person is just blind to the fact that Ashleigh could die or he is just stupid to the laws he breaks. Either way, Howard has gone to people about it and nothing is done. So really what can be done about is?
Now on to the important stuff. Ashleigh is having eating problems. She acts as if she needs to get sick at most of her feeds. She is having more bowel movements. All her cultures are negative. She really scares me sometimes. She s also more cranky. All her blood levels are normal. She is doing well in therapy. Today she ate green beans and squash in therapy. Oh and she was licking a dorito. Strong flavors are used to "wake up the mouth". Not much else is happening.
Sorry for venting to you all, I don't know if it is because I am burning out or the reality of these pass few months are setting in, I am just angry.
Thank you for your support and letting me vent on you.
Merry Christmas. With Love, Michelle
Friday, December 12, 2003 5:48 PM CST
I am so sorry that I haven't updated, I am not sure what is wrong with me. I have no extra energy for anything.
Dr. Escolar's visit wasn't bad. She didn't have much to say, Ashleigh slept through the entire visit. She wanted her seizure medication changed but Dr. K said no, it is more important to get them under control than to have her alert. She will adjust to the medications and be awake more soon. Dr. Escolar didn't get to much from her so she would like us to come back before we head home. Ashleigh's eyes did react to light, so Dr. Escolar was happy with that. She has fluid in her middle ears, nothing to worry about. Her tone was good. That is it.
I missed our appointment with Dr. Green, the eye doctor so it has to be rescheduled. Like I said, I am not myself right now.
Ashleigh has had all of her therapies this week and she woke up and was alert for them. She got her "toys" in the mail. They are toys she will use in her therapy teaching her how to use her hands again. She pushes the button to make the fan blow, the lights flash or music play. She also got her Kid Kart on Wednesday. It is a stroller/wheel chair, it will help her with her positiions and keep her body in line. She won't slump over. It is really nice, just a little heavy and difficult to set up. I am sure once I get use to it, it will be fine. She seems to like it. There is a seat part that comes apart, inside we have a base that can be low to the ground or it can come up to table level. It also has a tray to it that we can use for food or her toys. This stays inside because of germs. There is another part that has the wheels for her to ride in, we just set the seat in it. This part is for outside use only. I know that is not very exciting but it is very important for Ashleigh to have this. We fought our insurance company for it, finally they agreed to pay for it the same day that a check from Ashleigh's trust fund was sent out. The company mailed back Ashleigh's check. There will be more equipment Ashleigh will need such as a bath seat, when she is able to get a regular bath. This is for her to sit up since she does not have that ability on her own. She will also use a stander, this will help build the tone in her legs and hopefully one day let her be able to walk. We got a Christmas tree and decorated the apartment. Mackenzie was so excited when they came home with a tree, she was talking so fast. I laughed. We went to see some Christmas lights is Raleigh, they were beautiful. It was drive through, so Ashleigh could go. There was a part where you could go inside and see Santa, Howard took Mackenzie in to see Santa, got hot chocolate and gingerbread cookies. Ashleigh and I sat in the car since Ashleigh can't go in public buildings. I think we are going to do it again when Howard's mom and neice, Nicole come down next week.
Well that is about all that is happening down here, sorry. Hope all is well for all of you, many holiday blessings go out to each of you. Thank you for all of your love and support.
Monday, December 8, 2003 10:29 PM CST
Yes, July was a typo, we should be going home the second week in January, as long as Miss. Ashleigh behaves herself.
She has been doing well and there hasn't been much to update you all on. We had a few days off. Friday she did have feeding therapy as she is back to eating off of a spoon. Her body temp. was low, that is common in children with Krabbe Disease.
Sunday the Krabbe mom's down here; Lori, Angelique, Kelly, Theresa and myself went to lunch to celebrate Theresa and Daryn going home. As sad as it is for all of us (I will miss her energy), is is so wonderful that Daryn is doing well and on his way to complete recovery from Krabbe and transplant. Best wishes and lots of love go out to both of them.
Ashleigh does have an appointment tomorrow to see Dr. Escolar, she is the developmental doctor that we see. Our last visit with her was in July, pre-transplant. She was not very positive about Ashleigh's future so my nerves have been on edge. Dr. K. feels it important that Ashleigh's sees her because Dr. Escolar will be able to help with the therapies that Ashleigh will recieve back home. Emily, Ashleigh's nurse from 5200 is going to come stay with Mackenzie so we could both go with Ash. After the apointment I am going to take Ashleigh to clinic and Howard is going to take Mackenzie to get a Christmas tree. After dinner we are going to decorate and try to make this as normal as we can for Mackenzie. We are trying to figure out a way to get both girls with Santa. Ashleigh is not allowed to go in public buildings so we can't get it done at the malls. The clinic had Santa there last week but we didn't know about it until it was almost over so we missed it.
Howard's mom and neice, Nicole are coming down the week before Christmas. My sister, Laura and her family are coming down the day after Christmas.
I will update you about our appointment with Dr. Escolar tomorrow. Oh Ashleigh's hip x-ray is normal. I think I filled you all in on the rest of the test. I will go over the past history and let you all know. Also, I will update her medication list for you. We seem to add to it instead of taking them away. Ashleigh is just a stinker who likes to keep her mommy and daddy on their toes.
Thank you all for your continued support and love. Have a safe and wonderful holiday season. Remember to hug the ones you love and let them know how much they mean to you. Life is so precious.
Friday, December 5, 2003 11:26 PM CST
Sorry I haven't updated. I don't know where the time has been going. Not much to report either.
Ashleigh's EEG did show slowed seizure activity. I thought she had one during the test however it came back as a non- seizure. Her hearing/vision test that is related to the EEG did come back as she could not see or hear. We do not think that it is right and Dr. K said before transplant that it is not a very accurate test.
Ashleigh's MRI came back exactly as we thought it would. The chemotherapy and steriods cause the brain to shrink. It is temporary. It did show damage to the white brain matter (we already know that, it is called Krabbe Disease). The good news is that the brain stem has not been touched with the disease.
We are going to have Christmas here in North Carolina. Howard and Mackenzie are going to go get a tree on Tuesday. With us going home being up in the air, we thought for Mackenzie we should start celebrating the holidays. We also don't want to rush home, especially during the holidays, if Ashleigh still needs the care that is available to us here. The doctors here are afraid of Ashleigh having complications and the doctors back home not being familiar with her and being under staffed for the Christmas holiday. We are looking to return sometime in July but like one parent said we will believe it when we are on Rt 85 headed north. Thank you for everything.
Tuesday, December 2, 2003 10:39 PM CST
What a day! There is so much to share with you, so I might be all over the place with this updated. I will try to stay focused.
First alot of good news to share...
Ashleigh had her nerve conduction test yesterday morning. Howard took her, I chicken-ed out. Howard said she seemed to respond to the test. This is good, it shows that she has live nerves. Well, her test that was done in July and the one from yesterday was the same. No new damage in the past 5 1/2 months!! YEAH!
Oh there is more good news...Ashleigh's Echo-cardiogram done today shows that her heart is normall size and functioning normal. There was a little "thickening" at the bottom of the heart caused by the FK506 and steriods. This will correct itself. They will monitor it to make sure it does not cause the heart to work harder. Every baby is born with two small holes in their heart, they normally close after birth. Ashleigh's Echo done is July had shown that Ashleigh still had hers, today they were gone. They closed! YEAH!!
Her Lung Function test was cancelled because of her cold. So were where off to clinic where we recieved mixed news.
Well first we got all of the above news. We also weaned her steriods a little more and switched her FK to oral. Preparing to take out her central lines. However since she has a cold, we are not going to take her to surgery. Dr. K was concerned about her mucus being pushed into her lungs and if there was infection this could be very dangerous to Ashleigh. So we are not going have the lines removed. Which brings me to we are not going to return home on the 11th, we are now shooting for the 18th. Howard and I both feel we are going to in North Carolina for Christmas. All we care about it getting Ashleigh better and bringing her home when it is safe for her. We will have Christmas down here, but we will be together. That is all that matters.
Dr. K also thought that Ashleigh seemed more relaxed. She felt the Topamax (seizure med) is starting to work, we did increase it a little. We changed cold medications to a stronger one called Robinul. Dr. K was happy with Ashleigh's eyes movement and her reaction to light was much better today. She also said she could see a difference in her tone so she wants to get her back in therapy next week.
I will update whenever we get results in at the bottom of this update, please just stroll down each day to check.
Once again, you all have been so wonderful to us, Thank you, just doesn't seem enough. We wouldn't have been able to do this without your love, prayers and support. Thank you, Thank you, THANK YOU!
Happy belated Birthday to my nephew Michael. Anyone driving in Jersey, watch out he is getting his license tomorrow. Good luck, buddy.
Sunday, November 30, 2003 10:47 AM CST
Sorry I haven't updated in a few days, not much is happening with Ashleigh and I had my sister, Jerri and her family here for a couple of days.
Ashleigh does seem to be breathing better since she has been taken Clariton?. We have alot to do this next week. Starting tomorrow with a Nerve Conduction test. Tuesday we have here Echo-cardiogram, a breathing test and then our regular appointment with Dr. K. This will be an important appointment. We will go over switching her Solumedrol and FK506 over to oral so we can have her central lines removed. We will also have to go over the compression fracture in Ashleigh's back, and the possiblity of going home. Wednesday we have a EEG, BAER/VER test (this test the connection from the ears and eyes to the brain. This is not a very accurate test and last time Ashleigh had it she did not do well. Thursday Ashleigh has a MRI and a Spinal Tap. The MRI will be worse then the one done before transplant because the Chemotherapy causes some damage. Dr. K warned us not to be too upset about it. If a non- leukodystrophy child had a MRI after chemo it would show damage. It will not mean disease progression. Friday we have a pre-op screening for surgery on Monday. Monday she should have her lines taken out and a port placed. As you can see it will be a busy week, scary but also exciting.
My sister, Jerri, her husband, Jim and their daughter Samantha came for a weekend visit. It was nice. I took Jerri to see the clinic and hospital. Jim went stir crazy in the apartment so he went to explore Durham and 15-501 and Samantha and Mackenzie played very hard. They couldn't settle for bed. I was afraid that Mackenzie would be upset when they left, however, I had a harder time then she did.
Well I will keep you all updated as this week unfolds, we won't really have the test results right away but we will let you know how the day goes. Thank you for your support and help during this journey. I don't know if I could have done this without your messages everyday. Thank you.
Wednesday, November 26, 2003 9:19 PM CST
Today was once again...to much.
Ashleigh was up all night again. Same thing she couldn't hold her oxygen levels up high enough. Today at clinic she did it for the doctors. We started her on yet another medication, Claratin. This will help clear up any congestion that she may have in her nose passage. Dr. Kurtzberg will be back next week so hopefully she will be able to sort this all out. She did talk to Dr. Szabolcs, giving him permission to start Ashleigh on Calcium and Vit. D. So we added those to Ashleigh's growing list of medications. I thought we were going to decrease her meds. I told the nurse that Ashleigh heard a rumor that we were going home in 3 weeks and decided to act up. The nurse said it is because they have great Christmas trees in North Carolina. I don't know what is going on with her, but Lord it is scaring me. We have clinic tomorrow for IV Ceftriaxone. I am going to cook dinner here at the apartment for Howard, Mackenzie and myself. I am hoping Ashleigh will wake enough to each some sweet potatoes. This is not how I was expecting to spend this holiday, but oh how thankful I am to be spending it with the 3 most wonderful people in my life.
With tomorrow being Thanksgiving I thought I would share a few things with you that I am thankful for.
I am thankful for the air we breath. The beautiful colors of this earth. The freedom we have in our great nations. The men and women who give us that freedom.
I am thankful for my family, even though we may not always agree, I know I can count on you for support. For Howard's family, things may not always be what we think they are but that is what life is, I guess. I know you will always love my girls.
I am thankful for husband. I could not ask for a better father for my children. The enjoyment that I get from watching him play with Mackenzie and care for Ashleigh.
For Mackenzie for being a wonderful, caring child. Her imagination and role playing keeps me smiling all day. Her love for her sister is so sweet. She runs to her when she cries. Hugs her and tells her "I'm here little sister". Her smile and eyes warm me in a way I never thought was possible.
For Ashleigh for so many reasons. She has taught me so much about life, about being a mother, she has shown me the real purpose of life. I thank God for looking down on earth and picking me to Ashleigh's mother.
I thank DuPont and Duke for caring for Ashleigh. To the doctors, nurse practitioners, nurses and therapist for the wonderful treatment they have given Ashleigh. For Dr. K for dedicating her life to children who without her would not have a chance at life. She is an amazing lady.
For Hunters Hope, Kelly, all the Krabbe families and the other transplant families for the caring support they have given to us.
We live wonderful lives. They are so easily taken for grated. I know I did, we all do. Why do we need one day to express our appreciation for the things and people we have in our life. Why do we all "sweat the small stuff"? Life is a wonderful gift and I am one gratful person for the life I have been given. Thank you all and God Bless each and everyone of you.
Tuesday, November 25, 2003 7:41 PM CST
Last night Ashleigh was having some odd breathing episodes, I called Angelique who came over to stay with Mackenzie. I then called 5200 to take Ashleigh into the hospital to get checked. Well the doctor did not think that we needed to that. It is common with Krabbe to have difficult breathing. Well a million thanks to Angelique for her help. I sat up all night with Ashleigh setting off her alarms. Her oxygen was 98% one minute and then would drop to 76%. Her heart rate was 140's then would also drop to 54. Howard left to come down. When he arrived I took Ashleigh to clinic. Well with Dr. K being away, we thought we could have a fast Tuesday visit. Ashleigh and I got to clinic at 9:41. We gave in her blood and a stool sample and went to Fish Tank. Minutes later our Nurse Practitioner, Sue, came in. She put Ashleigh on Pulse-ox. Of course it had normal readings, but she could hear Ashleigh breathing harder. She ordered a respitory battery and had us moved to the Rainbow Day Hosital. Ashleigh recieved her IV medications. Sue then ordered a chest and abdominal x-ray along with alot of blood work/cultures. Nothing has grown from the black in her nose and her stools were negitive for viral infections. Ashleigh recieved an extra dose of antibiotic, Ceptriaxone. Sue came in to tell me that Ashleigh lungs were clear. All blood results were coming up normal. However, Ashleigh dose have 3 compression fractions in her lower back. At first, I thought that was impossible she hasn't gotten hurt. They are not from injury, they are caused by her lower mobility and the steriods. I talked to Sue about medication options. Ashleigh is in pain so we needed something to help her but we don't want to make her anymore sleepy. Dr. Szabolcs came in and told me everything that Sue did. They decided to try Ashleigh on Vioxx for the pain. We are also switching her Topamax from capsules to pills. This makes it easier to get down her G-Tube. Ashleigh is not allowed to have therapy for a little while. Dr. Szabolcs is going to check with Dr. Kurtzberg about starting Ashleigh on calcium and vitamin E but first we have a couple of stomach issues to fix. Ashleigh has not been tolerating her feeds, so we cut them from 6oz of formula to 2 1/2 oz of formula mixed with 2 1/2 oz of Pedilyte. She is also crying when she passes gas, they think that is related to the back pain. Her breathing is still an issue although it could be faster because of pain. Asheigh and I returned home at 5:40. What a day?!!
Thank you for all your love and support, please continue to pray for Ashleigh's healing. She seems to really need them lately.
Please say a prayer for Tommy Bennett and his family. Tommy became a precious Angel early this morning. Fly little buddy...
Monday, November 24, 2003 12:19 AM CST
Not much is happening with Ashleigh. Last night she was breathing different, she sounded like a engine trying to start. I put her on the machine and she was at 97-98 xygen. She has been very irritable, she sleeps with me again because she must feel me for her to sleep. I've tried her bed but she will only stay there for a couple of minutes before she starts to cry again. She just seems to be behaving different. I talked to clinic yesterday, they are going to run some cultures looking for infections. They did say that they felt she was a low risk of having any. Last night I just held her and cried. Today, she seems a little more content so far. She has been acting like she is having stomach cramps. One doctor said it is because of long term antibiotic use, it causes the intestines to "act up". She needs the antibiotics to protect her without an immune system. Oh, nothing has grown from the cultures of Ashleigh's nose. Thank God! We still have two weeks before they will have a the final results but so far, so good. We won't be seeing Dr. K. this week, she is celebrating the holiday with her family. She takes Thanksgiving off because she works all of Christmas and New Years. Next Monday we start Ashleigh's one hundred day studies with her Nerve Conduction test. This will tell them the amount of damage done to Ashleigh nerves in her legs and arms. Ashleigh had physical therapy today, she did not wake up much but she stretched her muscles a bit.
Thank you for all your well wishes and cards for both Ashleigh and Mackenzie on their birthdays. It was too kind of you all. Thank you
Please say an extra prayer for Tommy Bennett, he is having a difficult time through his 3rd transplant.
Thank you all for your unconditional support through these times.
Thursday, November 20, 2003 11:20 PM CST
Ashleigh was not very interested in Occupational Therapy today. Here session had to be cut early because we could not keep her awake. She slept most of the day today. Yesterday she had an incredible session. I got some great pictures of her holding her head up, Howard will post them when we get them developed. Ashleigh has also been acting as if she needs to vomit. She had a Nissen, which ties off her stomach so she can not get sick so she is gagging. We have clinic in the morning along with feeding therapy. We may have to cancel therapy if she does not wake up more. We also had to stop feeding her at home because she is sleeping so much. We are back to nothing by mouth. A minor setback. We will get back to it as soon as her body adjust to the Topamax.
Can you please say a little extra prayer for Degan who is having some Graft vs. Host issues. caringbridge.org/co/deganmiles
Sadly, I write tonight that Aroma has become an angel. She had some complications from transplant and disease. She fought a hard battle against MLD, tonight her body is a peace. Please remember her and her family as they struggle through these times.
Aroma was our neighbor on 5200, I spent many nights talking to her mom in the hall. She is a kind and loving woman, who always checked in on Ashleigh and the other children on the unit.
Thank you.
Tuesday, November 18, 2003 10:31 PM CST
Well the birthday celebrations are over for this year at least. Today Howard's mom and I took Mackenzie to see Brother Bear and to lunch. We had dinner, rice with butter and grated cheese, her choice. We had mini cupcakes that Mackenzie decorated with strawberries and blueberries. The strawberries didn't fit so she bit them before putting them on our cupcakes. She opened her presents and then declared her birthday over.
Howard took Ashleigh to clinic today. They lowered her Solumedrol down to 2 ml twice a day. In two weeks we hope to switch her to oral. Next week we are going to try to switch her FK506 to oral. If all goes well then we can have her central lines taken out. If the seizures don't stop with the Topamax we may have to add another seizure medication. Dr. Kurtzberg didn't mention which one. Still no word on what the black around her nose is. She had it again today. Next time she has it, I have to take her to clinic and have them take it out and culture it right away. What I took them the other day couldn't be cultured because it was not sterile and it has to be fresh. Dr. K said she was not sure what it could be but will culture for a fungus infection. This could be dangerous to Ashleigh with her immune system being down. We are hoping it is not that. So far everything is still a go for returning home. We have alot of people working on our house right now, a million thanks go out to them for all their help.
She has PT and OT on Wednesday and we don't return to clinic until Friday. It should be a slow week.
Best wishes to Haley, who should be returning home to New York this week.
Thank you all for all your loving support and prayers.
Tuesday, November 18, 2003 10:31 PM CST
Well the birthday celebrations are over for this year at least. Today Howard's mom and I took Mackenzie to see Brother Bear and to lunch. We had dinner, rice with butter and grated cheese, her choice. We had mini cupcakes that Mackenzie decorated with strawberries and blueberries. The strawberries didn't fit so she bit them before putting them on our cupcakes. She opened her presents and then declared her birthday over.
Howard took Ashleigh to clinic today. They lowered her Solumedrol down to 2 ml twice a day. In two weeks we hope to switch her to oral. Next week we are going to try to switch her FK506 to oral. If all goes well then we can have her central lines taken out. If the seizures don't stop with the Topamax we may have to add another seizure medication. Dr. Kurtzberg didn't mention which one. Still no word on what the black around her nose is. She had it again today. Next time she has it, I have to take her to clinic and have them take it out and culture it right away. What I took them the other day couldn't be cultured because it was not sterile and it has to be fresh. Dr. K said she was not sure what it could be but will culture for a fungus infection. This could be dangerous to Ashleigh with her immune system being down. We are hoping it is not that. So far everything is still a go for returning home. We have alot of people working on our house right now, a million thanks go out to them for all their help.
She has PT and OT on Wednesday and we don't return to clinic until Friday. It should be a slow week.
Best wishes to Haley, who should be returning home to New York this week.
Thank you all for all your loving support and prayers.
Monday, November 17, 2003 11:52PM CST
Well is has been a couple of days since I have been able to update so I have alot to fill you all in on.
First, Asheigh is doing well. She had therapy today. This morning when I was dressing her I noticed the inside of her nose was dark. I thought it might be blood so I used a Q-tip to wipe around the edge, it was black. She hasn't left the apartment since Friday to go to clinic. We don't smoke so I have no idea of what this could be. We had to take blood to clinic today for a FK506 level (it was a little high over the weekend) so I took the q-tip with me. They are going to culture it to make sure there is no infection in it but they thought it would be more enviromental. I don't really understand how. We don't go in public. We haven't even taken walks because of the weather. She is in our apartment. They just changed the air filters 2 weeks ago. I have no idea. She will see Dr. K today. We are hoping to lower more medication. If we can go down on her Solumedrol than we might be able to switch it to oral. We are hoping to do the same with her FK506. By doing this we can have her central lines taken out. She will then have a port put in for her blood draws. She is doing great. Home is about 3-4 weeks away!
Sunday, the Krabbe families came over to help us celebrate Ashleigh and Mackenzie's birthdays. We had a great time with everyone together. Ashleigh and Mackenzie were spoiled with gifts. Mackenzie has been playing dress up with all her new "big girl" stuff. Ashleigh has lots of toys to encourage her to move. We sang happy birthday and had cake. It was great to be with so many wonderful people.
Today is Mackenzie's birthday. She is 4 years old. Her life has been turned upside down and she is handling it so well. She gives me a hard time eating and going to bed, but every child does that. She loves her sister so. If Ashleigh cries, Mackenzie runs for her. She always reads, hugs and kisses her little sister. She is so patient and lovng. I believe this past year will make Mackenzie a great person. Everyone always told me that no 2 children are the same, how true is that? Mackenzie and Ashleigh were completely opposite. Different pregnancies, delivery, present and how different will their future be. It is hard to believe Mackenzie was born 4 years ago. Happy Birthday to our Princess Mackenzie!
Thank you for all you loving, support and prayers. Also your birthday wishes for our girls this past week.
Today was my brother Donald's birthday, somehow the day slipped by without me calling my mom to let her know that I was thinking of her and her loss. Sorry, Mom.
Friday, November 15, 2003 8:00 AM CST
A beautiful day it is. Ashleigh is 1 year old today. A day of miracles. She came to us as a special gift from God, one that needs special care and we were choosen to give. We don't have the same dreams as we did a year ago. We are not dreaming of her first steps or first words. Today we dream of good blood counts, no Graft vs. Host or infections. We don't hope for proms, college and marriage. Instead our hopes are for nerve repair, walking and talking. We know these things are far in the future but they are so close to our minds. Ashleigh is so beautiful, she is so precious and today she celebrates with her family. Thank you all for helping us make this milestone possible. The doctors, nurses and staff of Duke University are incredible, they are angels sent here to save babies, babies like Ashleigh, were Duke is their only hope. Thank you so much for this day.
To our sweet baby girl, Ashleigh, you are so special to us and we love you more that words would ever allow us to express. Baby, you keep fighting this battle, mommy and daddy will help you along this road. We will hold you tight and whisper in your ear, to stop your shaking. We will rub your legs and arms, to ease your pain. We will do whatever it is that you, my love, need. Please always remember, however this journey ends you are so love and always be. Thank you, Ashleigh for coming to mommy and daddy. We love you.
"You have filled my heart with greater joy..."
Wednesday, November 12, 2003 7:46 PM CST
Ashleigh had a good night last night, she slept well. She had her therapy this morning and actually stayed awake through it. The insurance company approved her kid kart, a stroller/wheelchair, that will help her with posture. Occupational therapy called they are coming for a consult on Thursday. That is really all the Ashleigh news for the moment. Haley's sister, Erin, helped me out alot today. Thank you sweetie.
When I wrote the message about our great military I left a few people out. Howard's other grandfather also served proudly along with his Uncle John (Army), my sister, Laura (Navy) and Howard's stepfather, Bill, also Navy. My brother, Larry, and stepfather, Walt were Army National Guard. There service to our great nation is much appreciated. I did not mean to leave these special people out. They have done our nation proud. Thank you.
Thank you for all of you unconditional love, support, help and prayers. You all have a special place in our hearts for helping us save our baby girl, Ashleigh Ryann Gwin.
Oh the count down is on, Ashleigh will be 1 year old on Saturday, a mile stone that we may have missed if it were not for DuPont Hospital, the incredible staff here at Duke and all of you. Thank you.
Tuesday, November 11, 2003 8:48 PM CST
When we sat down for our meeting with Dr. Kurtzberg back in June, she gave Ashleigh a forty percent chance of making it through the transplant. She thought Ashleigh would have alot of complications both from transplant and disease. Today at our appointment she said that Ashleigh has completely surprised her. She is doing wonderful, she can see improvement in her movement every week. Her GVH is under control and her disease seems to have level for now. She was very positive and of course this was exciting to hear. She is planning on sending us home the second week in December. We will have Christmas in our home. She is making the arrangements with Ashleigh's new team of doctors.
As wonderful as this all is we did get some bad news, Ashleigh's EEG did not turn our as we had hoped. She is having seizures. Dr. K. said they are disease related. It does not mean that the disease progressed or has entered the brain stem. Ashleigh will begin a new medication called Topamax. We don't know if as the enzyme starts to work in the brain if the seizures will end. Dr. K. said it is crucial for the brains development that we treat them now. Of course this is not the news we were hoping for but it is another bump that we will deal with and Ashleigh will fight her way through.
Degan's surgery went well, thank you for the extra prayers for him.
Thank you all for everything. You have been incredible, God has a special place in heaven for you all.
Tuesday, November 11, 2003 1:56 AM CST
As we sit and enjoy are freedom today, please remember the men and women who have fought and for those who are fighting today for our beautiful country. The treatment and care that Asheigh has received is partly because of our wonderful military. Thank you to those of you who put your life on the line for our freedoms. As I fight for my daughter's life, you risk your own life on the line. To those who critize you, take a moment and think of what we have in America, not the taxes or policies, the rights and security. We know that our military is not going to break down our doors, kill our husbands and rape us. Our military is the great protectors of the world. Please remember those who lost their lives for America, for us.
Howard's grandfather served in 3 wars, retired Col. My brother in law was in the Gulf War, Navy. Greg, Noah's daddy, serves in the Army. Even, Ashleigh's primary Nurse Sue is retired is retired Colonal. Mackenzie's Godfather, Dennis is full time National Guard and Howard is a Lt. in the National Guard, and from there the list could go on. Thank you to all of these "protectors" and the many, many more. You are the true heroes of America.
Ashleigh had a very relaxed day today, she only did the shaking a couple of times and seemed to be comfortable. I have a list of questions for Dr.K at our meeting later this morning and of course the EEG results should be in. I will fill you all in as soon as I know something. Thank you so much for all you have done for Ashleigh and our family. To our military personnel, thank you is just not enough. You are absolutely amazing. Thank you
Monday, November 10, 2003 12:14 AM CST
We still haven't gotten the results from Ashleigh's EEG, hopefully we will get them at our weekly meeting with Dr. Kurtzberg? I just e-mailed her a list of questions about going home and treatment Ashleigh will require once we are there. Ashleigh seemed to be a little more relaxed last night, she didn't shake as much. Her 1st birthday is on Saturday, it is hard to believe she is a year, what this past year brought, both the beauty and the horror. Sunday we are having a party for both her and Mackenzie, who will be four next Tuesday. They are 3 days short of being 3 years apart. Ashleigh had therapy this morning, however she fell sound asleep in the middle of her session so it was cut short today. I will try to get her to exercise later.
God recieved another special angel on Friday, Manny earned his wings Friday morning. Manny fought a hard battle against ALD, he is now free. Please pray for Manny and his family during these most difficult days. caringbridge.org/sc/mannymiramontes
Degan is having surgery today, please say a extra prayer for him today for his surgery to go well and for him to start eating so he can go home to Colorado.
caringbridge.org/co/deganmiles
Thank you all for your support and prayers, please know how much they mean to us. Thank you for remembering these other families as they struggle through these times along with us. Mostly thank you for praying for the many children that have been called home, to heaven.
Friday, November 7, 2003 12:32 AM CST
Today was a much better day at clinic. We went to have the EEG leads removed, then we went to clinic. Okay how exciting is this...We don't have to go back to clinic until Tuesday!! Yes, we are down to 2 days a week! After a very calm visit at clinic we had feeding therapy. Ashleigh ate a half of ounce of sweet potatoes. She did well and now I can start feeding her at home everyday. How awesome is that?! She also did a couple of cause and effect test. She was to hit the button and make the music play. She did it with help from her therapist. We are going to start working with her at home with an occupational therapist. She is doing so well. Thank you all for everything. A special Thank you goes out today to Carolyn for helping me through the past few days. You have been incredible to us and we could never repay you for all you have given us. God has a special place in heaven for you. Thank you
Tonight I was looking at some other web sites and came across a young man who recieved a transplant here at Duke, sadly Ryan earned his wings this past January. I thought I would share his site with you all. His mom is kind enough to post his writings for us and at only 18 years old he had a wonderful insight on life, family, love, and God. I think his writings could teach us all a little.
Ashleigh had a lot of these shaking spells tonight, a couple seem to a little worse than usual. I can't wait for the results of the EEG. Hopefully all is well and it is not seizures.
A few families have been able to break loose from Duke. Best wishes to Haley and Daniel as they continue their recovery in their homes. Mattie is in PICU, she needs lots of prayers, also Tommy and Jesse are have a bit of a difficult time, please say a little extra prayers for them. Dylan is doing awesome, doctors are talking about discharging him from the hospital next week!! Way to go, buddy. Degan is going to have surgery on Monday to remove a hernia, please remember him in your bedtime prayers on Sunday.
Here is a little story that I am sure will make you all laugh. Tonight I was giving Ashleigh her feed and medications. Mackenzie was suppose to be in the bedroom watching TV. Well she wasn't, instead Mackenzie thought she would like to have hair like Dora the Explora. Yes, she cut her hair above her ears. She took 3 big chunks out of her beautiful, long, blonde hair before she came out to ask me to help her cut the rest. Kelly is going to come over to sit with Ashleigh so I can take Mackenzie to get her hair fixed. Fair warning to those who know Kenz, it is going to be above her ears!
Good night.
Thursday, November 6, 2003 10:18 AM CST
First, please let me thank you all for your wonderful support that I recieved these past couple of days both here on this site and on my own e-mail. The past couple of days have been difficult, not that Ashleigh is in terrible condition. She is doing well. Yesterday we took her to the 4th floor of the hospital to have her EEG connected. She is going to wear them until Friday morning. She looks horrible with the gauze wrapped around her head. When we were leaving the hospital, a lady leaned over to her companion and said "Oh look, she must have a brain tumor". I just kept walking.
I recieved an e-mail at my personnal account that helped me with my anger toward God. God did not give my daughter Krabbe, He is a kind and loving God. He is able to grant Ashleigh a miracle and that is what we have to pray for. Satan is the evil one, Satan is the one who poisons us and he is the one trying to take my Ashleigh away from us. God has sent us Dr. Kurtzberg and the staff here at Duke to fight for our children and save them.
On a happier note, Happy Birthday to my sister, Jerri. Sorry we are not there to help you celebrate. How old are you?
Once again, thank you all for everything you have done for us. You are amazing!
Oh one more thing, new pictures have been added. Ashleigh in therapy and Halloween pics. They are great, hope you enjoy them.
I recieved an e-mail about my above posting. When I said that God can grant Ashleigh, I did not mean that I thought Ashleigh was above other children. I pray that Ashleigh has the strength and the doctors have the knowledge to save her along with all the children fighting for their lives. I have said several times that Dr. Kurtzberg and the staff here at Duke are angels on earth. My apology to anyone that I offened. All children are special gifts from God.
Tuesday, November 4, 2003 10:13 PM CST
How do you know if the ache in your heart is mothers instinct or just panic? Ashleigh is crying and shaking alot tonight. I don't know if it is because I needed to hear Dr. K's positive words today and missed those words at our appointment today or is it because I am looking at a terribly sick child who is too young to be suffering this hell.
I don't know if I ever shared this with you but when I was pregnanc a ultra sound tech told us that Ashleigh had Downs. I was so scared. We went to a specialist who said that Ashleigh had a 1 in 5000 chance of having Downs. From then on I was so nervous, nothing seemed right. Even when I held Ashleigh, I just wasn't sure. When we went to her check ups I needed to hear that she was okay over and over.
She's not okay, it doesn't make sense to me. I am a freak when I am pregnant, healthy. Nothing goes into my body that could harm her, I did everything right. People murder their babies, they abuse them. Why am I fighting for the child that I want so desperately. Why??? I am so angry with God, with the world. I don't understand why He is having my baby girl suffer so. Why did I have a beautiful healthy child and now I have beautiful baby who is fighting to survive? What is the "reason"? Everyone keeps saying that everything happens for a reason, what is it? If Ashleigh is to help save others, why make any of these children suffer? Why, why, why? I know I am not suppose to question God but I need a meaning tonight. I just need to know why I pump 17 medications into her little body everyday, why her only chance of survival was poison, why?
Tuesday, November 4, 2003 7:09 PM CST
Hope you all remembered to vote today. Getting elected officials into office that support newborning screening for Krabbe and other leukodystrophies is critical in saving babies. I often think of the skills Ashleigh would still have if we had only known sooner or the babies who would still be with their mommy and daddy. We, the general public, must fight for these babies.
Ashleigh had her appointment with Dr. Kurtzberg today. It did not go as wonderful as they have been. Ashleigh's central line still will not allow us to draw blood, we put more TPA in it and we are going to continue to flush it with saline and heprin. For now we are going to take blood from her red line, even though it is contaminated with FK506, they are just going to have a base count to go by. Not a big deal. Dr. K agreed with the Feeding therapist to start Occupational therapy. We are going to going to get a consult in our home next week. We discussed going home, it looks like we will be released two weeks after Thanksgiving, as long as Ashleigh does not have any complications come up. I have told you all about the shaking Ashleigh has been doing. Dr. K thought from our discription that they could be the nerves overshooting or medications. Today in clinic, Ashleigh did them in front of Dr. K and she thought three of them were fine, one she thought could have been seizure activity. Ashleigh is going to have an 72 hour EEG to check for seizures. They will glue leads to her head and wrap them with gauze. She will have a little fanny pack that will record all brain activity. If they are seizures they would be caused by disease, I believe that means Ashleigh's disease has progressed and she can continue to loose skills and functions. Dr. K also mentioned a drug called Klonopin, I know alot of Krabbe kids are on this, if you know anything about this medication could you e-mail me and fill me in. Thank you. She also thought that if they are seizures we would have to start a seizure medication. My heart sank when she talked about this.
I don't believe Mackenzie's godfather and his family will be coming down. Mackenzie is going to be so disappointed, she really wanted Kelsey to come to her birthday. I haven't told her yet. I'm hoping that she just doesn't mention it again, is that a cowards way out?
Thank you all for your kind words and support during this time. They mean more then I could ever express. Thank you.
Sunday, November 2, 2003 9:14 PM CST
Ashleigh is doing much better. Her rash looks better and she is pealing again. That is wonderful. Today I tried to draw her blood and her line wouldn't work. I took her to clinic and even the nurse couldn't get blood. Now she has three lines, one is for FK506 and Solumedrol only, the red line is contaminated so we only use it for IV meds in clinic and her white line is for blood draws. Her white is "clogged" and we gave her "draino" which is really TPA. I don't know what it is really called. Hopefully it works. It is important for this line to work so we can have the correct levels of FK506 which helps with the Graft vs. Host disease.
My sister is coming to visit with her husband and daughter, I can't wait. They are coming Thanksgiving weekend. Also Mackenzie's godfather, his wife and daughter are coming to share in Mackenzie and Ashleigh's birthdays. Mackenzie wants her "best friend" Kelsey to be here. Also Howard mom is coming down soon. This month is going to be busy with friends and family coming. How exciting!!
We will start our count down to go home on Tuesday after our meeting with Dr. K. Again, how exciting!!
Thank you for all you have done for our family. You all have been amazing. There is a special place in our hearts for you.
Saturday, November 1, 2003 8:15 PM CST
Today I went out with 3 other Krabbe moms, Lori, Angelique and Theresa. We went to lunch and some shopping. It was nice to get out and enjoy the air. It was a beautiful day.
Ashleigh had a good day with Mackenzie and their daddy. He left to go home, he will be back for our Tuesday appointment with Dr. K. Tonight, Mackenzie was pretending to be Dr. K., because she "loves her". I can only hope that Mackenzie will grow up looking up to someone like Dr. Kurtzberg. I believe that this experience as hard as it is on Mackenzie will make Mackenzie a better person, more caring and compassionate. She will help Ashleigh in her healing and Ashleigh will help her be better person.
I have read about two experiments that are being tested that will hopefully help Ashleigh and other Krabbe children even farther. One is a drug being tested by the FDA that may help and another is experiment here at Duke that the brain would tell a computer what it wants to do and the computer will then generate the nerves to do it. Both are still being tested and Ashleigh will have to recover from transplant before any other treatment would be possible. Dr. K. said they are 2-3 years away from both. To us there is a little more HOPE for our baby girl.
With our 100 day studies scheduled and Ashleigh doing so well we should be home for Christmas. I was nervous about making that transition but today I felt much better about it. I know Dr. K will still be very involved in Ashleigh's care. I am nervous about finding a doctor that knows about Krabbe, treatments, the future and is positive about her care and future. I am afraid of hurting peoples feelings about being aloud over, but I know they will understand it is for the best interest of Ashleigh. Visitors will be very limited especially during the winter months with cold, flu and viruses at their highest. We will still be isolated to our home, only leaving to go the the doctor. But we will be in our home, with our belongings, together with our limited visitors and our puppy dogs. Well they aren't really puppy's they are 100 lbs each, German Shepards, Rajah and Cyrus. Howards neice, Nicole takes care of them for us on the days that Howard is down here. A huge thank you goes out to her for all her help.
This Thanksgiving, we will have so much to be thankful for. Our children, families, friends, our medical team of doctors, nurses, therapist, the other Krabbe families and all of you who have supported us through this. You have all touched our hearts so many times over. Thank you so much for your loving support and prayers during this time.
Friday, October 31, 2003 5:19 PM CST
Happy Halloween! I love this time of year, the air, the trees, pumpkins, haystacks and all the children in their costumes.
Today was a little up and down in clinic. Clinic had alot of trick or treating and everyone was dressed up. Daryn was a skunk, Degan a pumpkin, Dylan a star, Ryan was Cat in the Hat, Katie was a princess, Ashleigh was a Bunny Rabbit and Mackenzie was Sleeping Beauty. We all met at clinic for a little trick or treating and then went to 5200 to wish all the other children a spooky day. We had a visit with Sue Woods, let for some festive fun and then had to return for some unexpected medication. Ashleigh's rash return in full form. She has a new outbreak of Graft vs. Host. They gave her an extra dose of Solumedrol. We had to increase her regular doses back up to 5 ml for the weekend and then we will go back down to 4 ml. This past Tuesday Dr. K weaned her to 3 ml but it was too low for her right now. We also had to switch her FK506 back to IV, the oral is not strong enough for her. So we had 3 days without IV medications at home. We are really concerned with the return of the GvH. They don't believe it entered any organs, they think it is just on the surface.
With all of this, Ashleigh did great in Feeding Therapy. We are going to have one more session with the therapist, then we can start feeding her at home once a day, jar food, no formula yet. We will continue therapy in clinic. We are also going to start having Occupational therapy in clinic or the apartment. This is to teach Ashleigh to use her hands. The Feeding Therapist thinks we can start teaching Ashleigh cause and effect. Like having her hit a switch and hear music. She has made great progress so far. We couldn't be prouder of our sweet baby girl.
A few other things, Congressman Rob Andrews office called us, they are starting to gather information for Ashleigh's Law, making newborn screening for Krabbe and 4 other leukodystrophies a law. How awesome is that?! If everything does happen for a reason, then maybe this is the reason. With Howard's stepfather being friends with the Congressman, maybe Ashleigh can save other babies.
Howard's grandfather was released from the hospital yesterday and is doing well. Thank you for all the extra prayer you gave for him. I promise to explain this soon, but could you say a few extra prayers for Howard. I can't really explain now but I promise I will within the next two weeks. Thank you for all you have done for us, especially the love, support, donations and support you have sent us over the past few months.
Some more news...our one hunderd day studies have been scheduled to start the Monday after Thanksgiving. Home should be soon after as long as Ashleigh continues to do well. Yeah-Whoo!
Wednesday, October 29, 2003 7:09 PM CST
Ashleigh had a great therapy today, she lifted her head a little and she held her head up. She also kept it in line when she was being turned. She is doing so well, I am so excited.
I thought since there wasn't much to write today I would give you an update on her medications (I have been promising for the past month).
Acyclovir 2.5 ml through her G-tube once a day
Amlodipine 1.25 ml through her G-tube once a day
Ativan .2 ml through her G-tube twice a day
Ativan .4 ml through her G-tube at bed
Amoxicillian 1.2 ml through her G-tube twice a day
Baclofen 5 ml through her G-tuube 3 times a day
Bicitra 5 ml through her G-tube 3 times a day
Enalapril 2 ml through her G-tube twice a day
Methadone .4 ml though her G-tube twice a day
Vfend 1 pill crushed given through her G-tube twice a day
Zantac 1.3 ml though her G-tube twice a day
Genasyme .3 ml 4 times a day
Poly-vitamins 1 ml once a day
Solumedrol 3 mg pushed through central lines twice a day
FK506 1 ml through her G-tube twice a day
Filgratim-GCSF 5 mcg given if her white cells drop below 4,000 in clinic through IV
Pentamidine IV in clinic once a month
Protopic lotion twice a day
Hydrocortsone lotion twice a day
Triamcinolone lotion twice a day
IVIG given in clinic IV once a week
Tylenol as needed
Orajel as needed
Hydramine 3/4 of a tablespoon as needed, at bed time only
Maalox is used on her butt, we then blow dry it so it forms a seal
Col. Butt Cream - at every diaper changed - named after Ashleigh's NP Sue Woods, a retired Lt. Col from the U.S. Army. We thank Sue for her wonderful care she gives Ashleigh along with her service of 26 year to our country. She invented this butt cream that healed Ashleigh's bloody rash. It was a mircle cream.
As you can tell her list of meds is long, we are slowly weaning them.
Thank you for you support and love during this journey.
Tuesday, October 28, 2003 10:04 PM CST
Another good Dr. K day! We weaned Ashleigh solumedrol (steriods)again. I am hoping in another month she will be off of them. We did keep her Methadone the same. Methadone dose not have side effects from long time use, steriods do, so she wants to get rid of them first, then we can work on other meds. Her blood pressure meds will stay as long as she is on steriods. Ashleigh also had her FK506 changed back to oral, along with switching her antibiotic from Ceptriaxone (IV) to Amoxicillian which is oral. She is now off of all IV pump medications. I push her steriods in slowly. She is happy with Ashleigh's movement and activity. She said she can see alot of improvement in Ashleigh from week to week. She is not too concerned with the jerking and shaking. She said it is common in post transplant children. Not only Krabbe but all diseases. Her rash has been light and even at times there is nothing at all. We are excited about our visit with Dr. K as every Tuesday she is very positive about Ashleigh's progress. Next clinic visit she will get to eat food by mouth with her feeding therapy. They are always good days too.
This week a special post transplant boy is her, Ryan. His family came to our apartment the last two nights for dinner. They have a daughter Katie who is the same age as Mackenzie. They had a ball playing together. It made things normal for Mackenzie. She misses her friend Kelsey back home in New Jersey. It is hard because Mackenzie is the only sibling down here and I am the only mother down her with out a spouse all the time. Howard comes as often as he can. He has to work for his pay and insurance. Katie and Mackenzie became instant "best friends". Ryan has made tremendous progress over the past two years. He was actually doing a little flirting tonight with all the Krabbe moms around him. He is a sweety. They have recieved some good news so far on their post transplant testing and we pray more is on the way. Pam, Ryan's mom, talked to me for 6 hours before we transplanted about the transplant and the progress that several children have made including walking and talking. Pam was an incredible about of support and information for us. A million thanks go out to her. Tonight all the Krabbe-transplant families got together to wish Kelly, Davids' mom and a Hunters Hope employee, a very belated happy birthday. Kelly is a huge help to the families down here and she came to my side when Ashleigh was taking to PICU. One of the nurses called Kelly and she dropped what she was doing and came to Ashleigh's bed side. Also the day we recieved Ashleigh's diagnose, I called Hunters Hope who put me in contact with Kelly who offered her support for us. Before we even knew if Ashleigh was able to transplant. She has been wonderful to us as she is with all the families who come through Duke. Sadly, Kelly's son earned his angel wings because he too suffered from Krabbe. Kelly now has dedicated her life to helping other Krabbe families and tonight we all thanked her for helping and supporting us along with just being a wonderful person.
We have met so many wonderful people through this journey, many of them Krabbe families along with Doctors and Nurses. I have referred to Dr. K as an angel on earth. Degan's dad wrote that everytime he looks at Dr. Kurtzberg he can see his hero. Everyone is so caring. There are so many good people down here. This disease has opened our eyes to so much. How precious life is, how valuable our children are, the good people in the world, we have learned not to take one single moment for grated. Ashleigh is doing wonderful but we are fully aware that could change any moment, and we are blessed that we are surrounded by Kelly and these families down here. My sister told me that it will be hard coming home. I am so nervous of that release day. Ashleigh is normal down here, her body, her lines, her mask - they are normal here at Duke. Back home they are rare. Also the people - Ashleigh being sick has effected so many people, all giving us an unbelievable amount of love and support - but this disease has changed us, we think different and that is going to be hard. Unless you have a child with a terminal illness or forced to give them a transplant you don't know what this is like. Even then, every journey is different. I wouldn't want you to. This is something I wouldn't want someone else to go through. I guess the adjustment of going home will just be like this whole experience - hard. Dr. K thinks sometime after Christmas we will be released. I would like to just stay at least through the flu and cold season. The slightest illness can cost Ashleigh her life. She will not have a normal immune system for at least one year most likely up to two years post transplant. We will still be confined to our home when we get there. She can only leave to go to doctor appointments, visitors will have to be limited. I know everyone will want to see her and I can't blame them but we do have to be extremely careful with illness and germs. Gosh, I sure am babbling tonight. I will update her meds. in a day or two, promise! Thank you all so much for everything. I am sorry Thank you just doesn't seem to be enough tonight. Please know how thankful we are for all of you that have supported and prayed for Ashleigh and our familiy. Lots of Love go out to all of you tonight.
Saturday, October 25, 2003 11:35 AM CDT
Wednesday after therapy Ashleigh slept for a while. Then some time later she became very cranky and was shaking her legs, arms, and head. She did it on and off until 5:00 am. On Thursday she did it a little not much. Thursday night it started to be contant. Friday at clinic she did it for both the NP, Sue and for Dr. Driscol. They don't think it is seizure activity because Asheigh responds to me. But they are not sure what it is. Dr. Driscol thought it just might be that she is over sensitive and not able to calm herself down. Sue was going to talk to Dr. Kurtzberg to see about a CAT scan and EEG to make sure there is not anything that they are missing. Last night she did it only a couple of times and then she slept through the night. She is also breathing a little harder. She is still registering at 97-98% oxygen and not requiring oxygen at home. They say her lungs are clear. I think she just likes to keep me on my toes. We will find out more on Tuesday when we meet with Dr. K. We were not able to go to 2 days a week because of her new difficulties but maybe next week we will. We also stopped her Amphoterricin - the nursed call it Ampho-terrible because it has bad side effects. We use to get it 3 days a week in clinic through IV. She is now taking a drug called Voriconazole (Vfend), it is a pill that I crush and put in her G-Tube twice a day. This is a great step in her weaning process. I will update you on her medications after Tuesdays visit with Dr. K we are going to make more changes then.
Yesterday I got a call from a neighbor who said that some political mailings said Steve Sweeney was taxing newborn screening, it had a picture of a mother holding her sick baby. This really upset me because it could not be farther from the truth. Steve was at Ashleigh's fundraiser. We spoke along with Congressmen Rob Andrews about passing newborn screening for Krabbe and other leukodystrophies. These two men listened to me about what Krabbe is, about her transplant, about what would happen if we didn't transplant and about helping these babies sooner. They are going to work on a bill to have newborns tested at birth, so they would not suffer the damage that Ashleigh has, so we can prevent more deaths and torture these children suffer. Steve looked at the pictures of Ashleigh from being healthy, to transplant, in PICU and in therapy. He cared about her and these babies. I don't know if he is being targeted for this because of supporting Ashleigh or because he has a daughter with Downs. Either way it was horrible to read and I took it personnal. For those of you who live in Steves district, please know that information could not farther from the truth and he, like you, has supported this family as we save our baby girl. It just felt like a cheap shot at him and somehow my family. Sorry I had to vent this out.
I will keep you updated on Ashleigh new problems and hopefully they will pass as she gets better sleep patterns. Thank you for all you support, prayers and love.
Good-bye and best wishes to Elijah as her returns home today. He has done an amazing job through the transplant process and we pray he continues. Elijah was diagnosed through his older sister being diagnosed with late on set. The doctors are not able to transplant her. Please say a prayer for this sweet family, Elijah as he continues to heal, his sister as she continues to fight and their parents for strength. Thank you.
Thursday, October 23, 2003 2:07 AM CDT
Well it is 3:00am and we (Ashleigh and me) have not gone to sleep yet. For some reason she is very uncomfortable tonight. I gave her extra Ativan, Tylenol, Oralgel and her Gas Drops. I can't figure it out, she keeps jumping and crying, then falling right back to sleep. I have tried everything. She had a mellow day today. Therapy this morning and then she slept a long time from her work out. Everything else was normal. We don't have clinic until Friday. She will also have Feeding therapy while we are there. Mackenzie being here does keep me some what sane. She talks, sings and dances all day. She is also a huge help. She runs to get me things and plays with Ashleigh. I talked to another Krabbe mom the other night she said that her older, Krabbe free child wants to have a sibling that can play and interact with her. I never thought of that for Mackenzie. I try to explain that Ashleigh will not play like her but how much does a 3 or 4 year old understand? Clinic called today to let us know that they believe Ashleigh's FK506 levels are fine, the central line that we use to draw blood (red line) is contaminated and we have to draw blood from her white line. Not a big deal, and Ashleigh is fine. Great News!! I am still trying to talk Howard into moving down here, with no luck. All the parents that come back for their follow up care tell me that being home is hard. Down here all the kids are wearing mask, no one looks twice at them. At home, she will be standing out. The fear of something going wrong and needing Dr. Kurtzberg. I know she still over sees everything from down here. All of Ashleigh's results are sent to her. She knows the disease. She is one of the only doctors in the world that treats it and she does not blame every single thing on the disease. She also said alot of people in the medical field don't support transplant so getting good bed side manners maybe difficult. I wish we could clone her. Dr K stays and answers every question, she doesn't rush out of the room. We talked to Dr. K about which hospital to get discharged to she first said C.H.O.P. (Children's Hospital of Philadelphia). Huge hospital and one of the best but I told her that we would rather go back to DuPont because all of her care is already set up there and we feel comfortable with the them. She told us that there is an excellent doctor there that she has released patients to in the past. I was happy to hear that, DuPont was great with Ashleigh and the level of care she recieved was wonderful. I think we most likly are going to be here through the holidays. I think we won't be discharged until January. Even though everything is going well and as long as we stay on this path she will start her post transplant testing (all the test that she had before transplant have to be repeated) and they don't start those until day 100. They last 2 weeks and day 100 for us is December 5th. I better sign off for now, I won't be updating until after clinic on Friday. Thank you all for everything, your prayers and support have been more than we ever imagined. A little extra prayer is needed for Howard's grandfather who is having surgery this morning. Thank you.
Happy 1st Birthday to little Dylan Kerdel. Dylan recieved his new cells last week to help him conquer this horrible disease, Krabbe. His family is here from Holland, so please stop by and wish little Dylan a great day and speedy recovery from disease and transplant. caringbridge.org/europe/dylan
Thank you.
Tuesday, October 21, 2003 7:02 PM CDT
We had such a great day at clinic. First we were only there fo 4 1/2 hours on a Tuesday! Second, Dr. K is so pleased with Ashleigh's progress. We are going to change some of her medications that she gets at clinic IV and her antibiotic that I give her IV at the apartment to oral within the next week. We will then start going to clinic twice a week. The speech therapist old Dr. K that Ashleigh did wonderful with her feeding. Her rash is fading away and her skin is looking great. The only thing that is looming over her is this FK506 levels. They believe that the line that we draw blood from is contaminated and her levels are really fine. They still have to make sure because of the complications that it could cause to the kidneys. I am so excited for Ashleigh doing so well when the odds where against her. Her new G-Tube causes her food to go in really fast, this makes her gag after 5 ounces of food so we had to cut back on the amount she eats. Dr. K said that is fine, she has enough weight on her. I thought that was funny considering she was under-weight when we came here.
Mackenzie and Ashleigh's birthdays are quickly approaching us. Ashleigh will turn 1 three days before Mackenzie is 4. It seems like yesterday that we had Mackenzie. She is such the big sister, helping me with Ashleigh. Ashleigh is her 1 year has already gone much, she is an inspiration to us. She opened our eyes to so much. Both our girls are the world to us, nothing is more important then them. We thank God for both of them everyday.
Noah's parents left for a very long trip back to Hawaii, we wish them the best as they return home.
In the last 2 weeks five children have lost their battle with the diseases they fought. They are in heaven without disease, God's perfect Angels. Please pray for these children and their families during these times. Please give them the incredible support you have all given us these past few months. Thank you.
Sunday, October 19, 2003 7:49 PM CDT
What a busy few days! Howard came down yesterday morning. Ashleigh is still having some difficulty with her FK506 levels. They are reading very high, this can be dangerous for her kidney functions. They are trying to figure out the reason, we have lowered her dose but because she has active Graft vs. Host they can not cut it out completely. I am getting a nervous about her levels. Her blood works shows that her kidneys are okay for now. Her skin is still pealing.
Yesterday we (all the Krabbe families) sent white balloons to heaven to Noah. It was beautiful seeing them float away. So peaceful. His parents are planning on returning to Hawaii on Tuesday, they will be deeply missed here at Duke.
James, Degan's dad and Debbie and Greg Angel Noah's parents came over tonight to watch football with us. I think it was nice to have sort of normal activity in our life for a little while.
Someone asked me if I was bored down here by myself, NO, there is no time to be bored. I would say I am more lonely then anything. I thought I would share my day with you. I am usually up at 7:00 am, shower and get dressed. At 8:00 I feed Ashleigh and give her 7 different medication. I then change her and dress her. This is were the day can vary. On Sunday, Tuesday and Friday we draw blood, run IV medications and head for clinic. She then gets one IV medication that takes about 2 hours to get, we are at clinic for about 4 hours on Sunday and Friday. On Tuesday we are there for 8-10 hours. During this time, I give her oral medications and feeds at noon, 4:00, 8:00, and midnight. At 9:00 pm she gets more IV medications that takes about 3 hours for all 3 medication to run. During the day hours she gets medicated lotions rubbed on her every two hours. At 7:00 pm I usually bath Ashleigh and start her nightcare. In between all of this I vacuum and clean the apartment constantly, all germs are extremely dangerous to Ashleigh's health. So as you can see, there is no time to be bored.
Ashleigh's feeding therapist asked me if we were on a emotional roller coaster. I would say yes. I am scared, lonely, sad, depressed, mad and disappointed all at once. Happiness only comes from good blood results, Ashleigh opening her eyes, spending time with Mackenzie and Howard as a family. Some kind of normal activity, that is isolated in our apartment but we are together. Family movie or game nights are even more special. Ashleigh has opened my eyes to so much and for us life will never by taken for grated or pass by without us thinking how lucky we are to have our girls.
When we go to clinic we go to a waiting room called "the fish tank room", all of the children there are chemo patients, all were that blue mask and have bald heads, all are fighting to live. Something most of us take for grated. I know I did. They are sick, vomiting, to weak to move, yet they are so beautiful, all special gifts.
Someone also said that Ashleigh is out of the woods and because we are outpatient she will be fine. That could not be farther from the truth. Ashleigh does not have an immune system. They slightest germ can take her life. She will be immune-suppressed for at least one year possibly two. She can also still develop complications from transplant. The chemotherapy is not out of her body and can still damage her. She is growing her donor cells, that can change. Ashleigh is still at a very dangerous state right now. Your prayers are still very much needed. Please continue to pray for our baby girl, along with all of the children here at Duke, all the children who have been affected by this horrible disease. Thank you for all of these prayers. Thank you for all you have done for us, you have all been amazing to us. A million Thank you's go out to you all tonight and always.
Thursday, October 16, 2003 1:55 PM CDT
Ashleigh was off from clinic for the last two days, however we still had to go. Yesterday she had her G-Tube replace with a better type, called a Micki. I really like it, works much better without leakage and we can order replacemnet parts like the connecting tubes. Today we went because her FK 506 levels tripled so we went to give them some blood for a re-test.
Howard's mom was down for a couple of days, she left yesterday. I am keeping Mackenzie with me for the week, now that we only go to clinic 3 days a week I wanted to spend sometime with Mackenzie. Howard will be down this weekend.
Thank you for all your love, support and prayers.
Please pray for Darin who is having some problems with Graft vs. Host. Dylan who recieved his transplant. Grow Cells Grow! Elijah who is going home soon, and Degan who just won't eat for his mommy and daddy. Please always remember all the children that this disease has taken, including Noah, David, Ellie, Lea, Haley, and Abigail. This list could go on far to long. Thank you for all these much needed prayers.
Tuesday, October 14, 2003 10:12 PM CDT
Another long Tuesday at clinic today, but it was full of good news. Dr. Kurtzberg said it would be okay for Ashleigh to start eating by mouth in her feeding therapy sessions. So Friday, Ashleigh will take her first bottle in 3 months! From what we were told, the therapist is usually not very positive about starting feeds with Krabbe Kids and Dr. K is usually cautious about starting feeds. After they talked, they thought Ashleigh was ready. Dr. K also thought Ashleigh made alot of improvemtns in just this last week. We didn't wean any medication this week. With her playing peek a boo with this rash and her increase crying we all agreed that lowering her meds. wouldn't be beneficial to Ashleigh. She is not on alot, I was just hoping she would wake a little more. Dr. K said the Methadone shouldn't be making her sleepy anymore and that is the one I am anxious to get her off of. She needs it because of the pain from her starting therapy up again and the bone pain. Her antibiotic will now be given IV at the apartment! Why? Oh because we are only going to go to clinic three days a week!! Tuesday, Friday and Sunday are going to be our clinic days. We will only draw blood on those days or if Ashleigh runs into a problem. What a great day for her. She has come a long way, has a long way to go but we couldn't be any prouder of her for her will to fight this "war".
Thank you all so much for the love, support and prayer that you have sent us over the past 4 months. Words just can not express how much it has met to us. Thank you.
Monday, October 13, 2003 9:12 PM CDT
Sorry it has taken so long for an update, Ashleigh has been a little demanding and Mackenzie is here for a visit. Ashleigh is doing well. She has had a fever and blood in her diapers, the doctors are not concerned. The fevers can be the new cells coming in or something as simple as teething. The blood is just the mucusitis in her stomach coming out. Her skin was pealing, that is just old Graft vs. Host healing. Her crying has started up again along with being "jumpy", we increased her Ativan hoping to help her. She has done well, her counts are still holding on. Friday we had a appointment with feeding therapy, she thought Ashleigh's suck was strong and we could start trying to give her some formula, food and even juice by mouth as early as next weeks. How exciting is that?!
Today I heard that someone was writing horrible things to Greg and Debbie, Noah's mommy and daddy. Who ever this person is must be sad, to kick someone in their darkest times. This person must not have been privledged enough to share in this wonderful baby's life, a life that ended too young. We feel lucky to have known Noah and thankful for his parents. For Howard and I, we could not take Ashleigh home where there was no hope. Hope was giving to us by Debbie Prichard. We were no going to transplant Ashleigh, I talked to Debbie for hours one night. She took time out of her busy schedule of medications, suction, feeds and appointments. to educate me about transplant and the future of our Krabbe babies. Debbie came to my side when Ashleigh was taken to PICU, brought me a pick me up gift bag when I was sad and depressed about given Ashleigh chemotherapy. Greg has let us into the most intimate part of him, his heart. I could never thank them enough for their part in saving Ashleigh. They are truly wonderful people who did not deserve to be kicked. These people who judge them and the rest of the Krabbe families for our choices will judged, and for them I hope when judgement day does come May God have mercy on their souls. Thank you Debbie, Greg and Noah for allowing us into your world, you have been an inspiration to all of us.
Thank you to all of you for your UNCONDITIONAL, NON-JUDGEMENTAL LOVE, SUPPORT AND PRAYERS during these times.
Please log on to caringbridge.org/hi/noah to let Noah's parents know that we do support and love them.
Friday, October 10, 2003 4:16 PM CDT
Today at clinic Ashleigh recieved her medications, then had a few mild complications. She had a fever, they took blood for cultures. Her rash is still bad, they gave her an extra dose of steriods. We were about to walk out when she had a dirty diaper of all blood, they cultured that too. No answers, just test. I have a sick taste in my mouth, I fear that things are going to crash down on us and Ashleigh is going to have serious complications. Today we recieved her donor test results. Greater than 99% donor, none of her cells were present. That is terrific, I am just afraid to celebrate, everything changes so quickly here. We also had feeding therapy in clinic today, next week with permission from Dr.K, we are going to start trying bottles and food product by mouth. Her therapist was thrilled by Ashleigh's abilities. After we returned from clinic, Monica, Ashleigh's physical therapist came to the apartment. Ashleigh didn't care for all the moving around, but she will get use to it, and hopefully enjoy it as much as she did as an in-patient.
Darin is having a couple of complications of his own, please say an extra prayer for him. Deagan is doing well except for him refusing to eat. They will be able to home to Colorado if they can get him to take food by mouth. Elijah should be leaving soon, he did so well through this journey. A few non-krabbe families also fighting the transplant battle and are in the need of prayers, Hayley, Haley and Daniel all are outpatients now but still have a long healing process in front of them. Please pray for all of these sweet children. Of course, please always keep Noah in your prayers, God's sweet angel. Pray for his mom and dad, their pain I could never imagine. Please pray for all of these children and their families. Thank you
Thursday, October 9, 2003 8:48 PM CDT
Ashleigh had a little bit of a difficult night. She was waking up crying and had a slight fever. She went to sleep for the night at about 5 am. In clinic today some of her blood results were a little off. A couple of weeks ago we switched her FK506 from IV to oral. Now it seems that the oral is not entering the blood stream enough so we may have to switch back to IV. Her graft vs. host rash is starting to act up pretty bad. She now has raised bumps on her body. The rash on her bottom is getting better. Dr. K has us putting Maalox on her butt and then blow drying it. In clinic we put oxygen on her butt. Other than those few things...Ashleigh is doing great.
I read my past entries were full of emotions, now I think I am drained. I am numb to my surroundings and daily schedule. Nothing can effect my or my being the way this has. Ashleigh has taught me so much about life and death. The end of this fight is not in our hands or that of the doctors, it is up to God, only He knows the ending.
Thank you
Wednesday, October 8, 2003 6:36 PM CDT
No new changes with Ashleigh, she is waking up a little more. We love seeing her blue eyes. I feel like they smile at us. She is going to have a visit with her new physical therapist at the apartment. She is going to have feeding/speech therapy at clinic. On Wednesday she has an appointment with the doctor who put her G-Tube in. Hopefully they will replace the one she has now, it leaks so much that her clothes are wet and the sterile dressing that covers her central lines has been pealing up and getting formual in with her lines. This worries us because of the risk of infection.
Please pray for little Angel Noah, along with all the other children who are fighting this disease and those who are resting from their battle.
Thank you so much for your support, prayers, and love. We could never thank you all for all you have done.
Tuesday, October 7, 2003 9:14 PM CDT
Today we had the longest clinic days yet, 10 hours! Ashleigh recieved her medications, then needed red blood cells...the day seemed to go on forever. Finally when we saw Dr. Kurtzberg we changed her FK506 again, we had to increase it again. We did lower her steriods and Dr. K said we should be able to do that once a week. Next week we might be able to cut clinic down to 3 days a week. Everything went well for Ashleigh. She does have a bad diaper rash, minor to some side effects of transplant. Dr. K felt that Ashleigh was moving much more and seemed to content for this stage of the disease. I didn't realize what she had said "this stage of the disease". I wish I caught it when we where still in clinic. I wish I knew what Ashleigh's future holds.
Our minds wondered alot today, I cried alot with the loss of Noah. He was not my child, but I have grown to love him so. He was so precious and so young. Why did God take him? Why can we accomplish so much as humans but diseases like Krabbe are still claiming our babies? We cure so many diseases, why not Krabbe? Why did this innocent child have to leave his loving parents? Everyone keeps saying everything happens for a reason...what could be gained by such pain. His parents stood by him, loved him and cared for him, why must they suffer so. He was a precious baby...he never got to walk or talk, never played with others, made a mess with his food, why was he denied so much here on earth? May he be able to do these things in heaven, with his Krabbe comrades. What was possibly gained by this? There are so many who have cried and will cry for this precious baby and his loving family, the world has lost so much with his passing, God has gained a most precious Angel today, his name is Noah and he will always be in our hearts.
Tuesday, October 7, 2003 7:28 AM CDT
This morning God recieved a special Angel. Noah Prichard earned his wings early in the morning. He was a hard fighter in this horrible war called Krabbe Disease. His parents his comrades. He fought until his little body was just to tired and God called him to rest. Please pray for Noah and his parents. His loss will be felt by so many. He was a light for us in our own war. He has gone on to heaven where he will play and run with other babies.This morning the world lost a sweet precious angel named Noah Prichard, may God bless him and hold his family tight.
Monday, October 6, 2003 7:41 PM CDT
I returned to North Carolina...it was nice to be home, my heart ached to be here.
Asleigh is doing so well, her counts are up and she is starting to move a little more. We are still weaning meds. and her FK506(to help with graft vs. host) levels have been a little low so we increased it a little. Friday she starts home therapy.
Tonight, I ask you to say prayers for sweet Noah Prichard. He is in need of a mircle that only God can give. Please ask God to spare this precious angel, allow Noah to stay here with his incredible parents. They are amazing people. I could only hope for their strength and courage. I can not tell you how much this little boy means to us. His mommy helped us save our Ashleigh. He has been putting up a strong fight, he is tired and he needs our help. Please pray for him.
caringbridge.org/hi/noah
Today is also a special day in both Howard and my families. My brother, Georgie, earned his wings when he was thirteen. Today is his birthday. Howard's sister, Kristy, also earned her wings when she was 29. Today is her birthday. Happy Birthday to both of these angels.
Saturday, October 4, 2003 10:04 PM CDT
It has been a couple of days since I have updated, Ashleigh is doing wonderful. She is making cells. Her white count hasn't gone down anymore since the first day that we stopped the "G". She is holding on to 14,700 for her WBC. Next week we are going to start having PT in the apartment. I don't know how the schedule will work with us also going to clinic. We are trying to set up all therapy done at "home". Hopefully it will all be sorted out soon.
Howard is with Ashleigh for the weekend and I flew home yesterday morning for the weekend. I will return to Duke on Monday morning. I went to Ashliegh's fund raiser last night. What a great success!! Raising a total of $73,000 since the Ashleigh Ryann Gwin Trust Fund opened last month.
With the care and equipment Ashleigh will require her trust fund. My father in law, Bill, raises money every year by sitting on the roof of Sam's Club for 4 days, all the proceeds goes to Make a Wish Foundation. He is now looking for something to do for Dr. Kurtzberg's research for Krabbe. We also had Congressmen Rob Andrews there last night, we talked about passing laws for newborn screening. I gave him Micki, from Hunters Hope, number. Hopefully they can work on something so we can help more babies. My emotions last night were out of control. It was so overwhelming to see all the people who want to help us. Ashleigh brought us all together last night. I was amazed to say the least. I want to thank our friends and family who worked so hard on the event. It was incredible. The work they did, their time and generosity is so much appreciated... I hope they know that.
Howard was enjoying his time with Ashleigh. I asked if he was lonely in his free time, he said no, there was 30 games on today. Don't tell Jill and Andrea what Howard was doing, especially if they worked the weekend. HaHa. Please pray for Dylan, he is beginning his chemotherapy this morning, and of course, Noah who is in still having a hard time in PICU.
Thank you for your support, prayers, and love.
Wednesday, October 1, 2003 7:32 PM CDT
Not much changed today. Without Howard things are so much harder. Twice the amount of work, half the amount of sleep.
Ashleigh WBC went down to 14.2. Here count being so high was making her uncomfortable so the doctors wanted it to drop. Everything else is about the same with Ashleigh, we were at clinic for 5 hours today, 2 hours in the "fish tank room" (waiting room), 2 1/2 hours of infusions and 1/2 hour of trying to get a normal blood pressure.
Dr. K gave me a list of things she wanted Ashleigh to have from the drug store. None of it was available at the clinic pharmacy. At first I didn't know what to do, I can't take Ashleigh to the stores. I have wrote about a family from NY, their daughter Haley was also transplanted for a different metabolic disease. Haley father was kind enough to run to the drug store for me. Bobby, If you read this, Thank you.
Thank you to all of you, for your love, support and prayers.
Good-night
Please say a few extra for Noah who still continues to have complications. caringbridge.org/hi/noah
Tuesday, September 30, 2003 11:03 PM CDT
Today was full of ups and downs. Ashleigh had her first outpatient visit with Dr. Kurtzberg since her transplant. We asked about weaning her Methadone down some. She agreed and it was moved from .5 ml to .4 ml. One medicaiton Ashleigh is taken FK506 was causing her to break out in a bright red rash. Dr. K said it is the chemicals it is mixed with to make it IV, so Ashleigh will continue taking it. However, it will now be oral through her G-Tube. So she no longer is on an IV pump. Her Ativan was also changed, we are decreasing the amount. Hopefully she will wake up some. Dr. K was also happy to see that her legs and arms were loose. Ashleigh held Dr. K's hand the whole time. Ashleigh also reacted to the light and to movement. Dr. Kurtzberg was very positive about Ashleigh's future. We are not "out of the woods", but she is doing so well.
All of Dr. K's visit was not great...some how Ashleigh Fish test results were mixed up. She came back with 0% donor cells. The test only looks for the sex of the cells. Ashleigh donor was listed as a male and all the new cells were female. We are not sure where the information about 100% donor came from. It was listed wrong or the nurse read it wrong. Dr. Kurtzberg felt the results had to be incorrect because of Ashleigh symptoms are consistant with engraftment. So she went on a hunt for an reason. Well apparently who ever collected the cord blood listed the donor as a boy, Dr. K called the donors' mother and found out that the donor is a girl. Ashleigh is now having a test done to determine whether or not the cells are donor. This test is very complex and won't be back for a week. Dr. K said it really just for our "scrap book", she knows she is engrafted. It is not all that bad, Dr. K knows what she is taking about and I trust what she has to say. I believe her when she says Ashleigh is doing great. We talked about sending us home, in about two months or so. She will most likely discharge us to DuPont Hospital. Ashleigh is doing so well and her future is well in God's hands. I trust Him to take care of her and see her through this. I went to visit 5200 today after clinic, Dylan is going to start chemotherapy on Sunday. Degan and Elijah are beginning their post transplant studies, they will be going home soon. Daryn is outpatient and we have not ran into him yet for an update. Hopefully all is going well. Hayley is doing great, we saw her today in clinic and she was smiling and waving. Noah is in PICU. Please pray for all these special children as they continue on there journey. Thank you for everything, we could never express what your love, support and prayers have met to us.
Monday, September 29, 2003 9:59 PM CDT
Another day with no blood products!!! She is doing so good with holding onto her cells. Ashleigh's WBC today was 24.2.
We had a little problem with her FK506 tonight, they forgot to deliver it to us. We called and they brought it to us at 10:00 pm. I thought we were going to the hospital to get her dose there, but the pharmacist from the home health care made it up and had it delivered to us.
It has been an eventful week, beside learning all of Ashleigh's care, adjusting to the apartment, locking my keys in the car. Today Mackenzie and I dropped Howard and Ashleigh off at clinic and went to find shoes for Ashleigh. Well we got lost, not just 5 minute lost. 4 hours later, we found the apartment! Never bought shoes! Came home empty handed! I don't believe I left North Carolina, I could have been almost home, if I knew what I was doing. I am the worst person for directions, Howard can find his way anywhere, it drives me crazy.
Tuesday is our big clinic day! We see Dr. K. We want to ask about changing the FK506, everytime she receives a dose she seems to have worse rash break outs. We also are hoping to wean her off of more of the methadone. I will update her medication list for you all after we meet with Dr. Kurtzberg, hopfully we can get rid of some. We heard from another parent that the rash from the FK is not enough to change the medication to the doctors. We'll see.
Noah is still in PICU, please say lots of prayers for him. Thank you all for the kindness you have given us over the past few months. We could never re-pay you for your support and prayers you have given all of us. Thank you just doesn't seem to be enough.
Sunday, September 28, 2003 5:43 PM CDT
Howard must be jinx'd *** I took Ashleigh to clinic and we were out in 3 hours. Again, no blood products needed. And they may cut her "G" down to every other day. We will find out Tuesday. Her WBC today was 24.6! No more bloody diapers, I think the one was just Ashleigh's way of keeping us on our toes. Last night she set her pulseox off a couple of times. By the time we got to her she was already bringing her levels back up. Once again, we were on our toes. Her rash is still playing hide and seek or peek a boo with us. She has been eating great *** 130 cc every 4 hours! Tuesday is our long day at clinic, we will see Dr. K. We are a little excited to hear what she has to say about Ashleigh's progress. To us she is sailing through this, I would like to hear what Dr. Kurtzberg is thinking. We are going to see what she thinks about weaning her off of some more of her medication, especially the methadone. We want her to comfortable but all she does is sleep. Getting a glance at her blue eyes is a treat for us. After we came "home" from clinic we cleaned the apartment and organized all of Ashleigh's paperwork. Hopefully we will be in bed early tonight, 2:00 am is just too late these days. Howard's grandfather is planning on having surgery on Wednesday at Jefferson University Hospital in Philadelphia. The same hospital that does the Krabbe testing. I am hoping to come home soon for a couple of days, I have some things to take care of back in New Jersey. We can't really schedule it because everything will depend on Ashleigh's schedule and progress. Howard and I have said from the time Ashleigh was diagnosed, we want to make this disease public *** educate as many as we can with the horror of leukodystrophies. I have been thinking of that today, and I think I need to do just that. How I don't know yet, but I really need to do it for Ashleigh and all the other babies that this disease has effected. Any suggestions on how to do it, please e-mail me at moocow517@att.net
Thank you for all your love, support and prayers.
I just heard that Noah is back in PICU, he has bacterial pnuemonia and is having a tough time. Please say lots of prayers for him and ask everyone you know to also, this little guy really needs them tonight. Thank you.
Saturday, September 27, 2003 8:29 PM CDT
Ashleigh is doing incredible. Her WBC today jumped to 24! She has not needed red blood cells for 6 days! However the best news we have to share today is we got Ashleighs donor test back and she is 100% donor cells!!! We have been celebrating all day! She didn't want the day going by without giving us a scare so around 7:00 tonight we had to take back to clinic because she had a lot of blood in her diaper. I called clinic and they said to bring her in. They took the diaper to culture it for some types of virus. They also said it is normal to have bloody diapers. They gave us another presciption, although we could not find a pharmacy open. She will get her dose at clinic in the morning and we have to get it filled at the clinic pharmacy on Monday.
Thank you all for your love, support and prayers. Words could never express how much you all mean to us. Please pray for the children that suffer from this horrible disease, those who have other illnesses, all those on 5200 tonight. Also a little extra for Howard's grandfather, he really needs this surgery as soon as they clear his lungs up. Thank you all again.
Friday, September 26, 2003 10:59 PM CDT
Howard experienced a "day at clinic" today. Mackenzie and I dropped Howard and Ashleigh off at clinic around 10:30 and we didn't pick them up until 7:00. After getting her IV medications, she needed platlets. It takes an hour to get the blood products to clinic. Her WBC was 9.5 today. They dropped a little but we expected that because of the decrease in GCSF. Her RBC is going up for two days in a row. Doctors are just watching because it is too early in transplant for her to make RBC's. So Mackenzie and I went to Walmart to get some supplies, such as diapers and whatnot. We get out to the parking lot, loaded the car, and when I went to put Mackenzie in I realized I locked my keys in the car. How funny! We went trucking across the parking lot, back in the store. We called the road side assistance and sat in the parking lot for an hour. I kept telling Mackenzie I was going to tell her daddy she did it. She was singing to me "mommy locked the keys in the car and daddy's going to be mad". Howard laughed and said at least I didn't run out of gas. I am famous for driving on empty. We spent the rest of the day in the apartment. We weren't chancing it.
Thank you so much for all your prayers but tonight I ask for a couple of extra. Noah has been re-admitted to 5200. His little body has been through so much. Noah's parents have come to mean so much to us. I think his mom talks as much as I do, and his dad is in the Army so we know Howard talks a bit. They have also been full of information about transplant and support for us. Dylan had his shunt line placed back in and will be starting transplant soon. We pray for these two precious boys as they continue to fight this horrible disease. Also, Howard's grandfather is very ill and in the hospital. He needs a surgery on his stomach and he can't have it until this lungs clear up. Please say a couple extra prayers for these special people. Today, we ran into Ashleigh's next door neighbor on 5200. Aroma became an outpatient yesterday! Way to go sweetie! Thank you all for your love, support and prayers.
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