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Andrew's Web Page 
Welcome to Andrew's Web Page.
It has been provided to keep people updated about Drew and his progress- from his diagnosis of Hurler's Syndrome in May 2001, to the bone marrow transplant in August 2001, to post transplant recovery.
Hurlers Syndrome caused Andrew's body to lack an essential enzyme needed to break up mucoploysaccharides (sugar molecules). Without the enzyme, these sugar molecules would start building up in his body leading to severe damage to the brain, heart, liver,spleen and bones. This build up would eventually cause death.
Through his Bone Marrow Transplant, his body is now able to produce the missing enzyme, stop the progression of his disease, and even reverse some of the damage. Thanks to all for reading the updates and sharing your thoughts in the guestbook.
Journal
Tuesday July 1, 2008 2:14 PM CDT Hi everyone,
We are home. He did great. We had to be there at 6:00. Surgery started about 8:00 and was over at 10:00 and we were leaving by 11:00. That is pretty fast time for the recovery room. Andrew has been sedated 10 times in 6 different hospitals and this is the first one that didn't allow me to go back to the OR with him until he was asleep. I was not very happy with that at all. This kid is facing a lot more surgeries in his life and he doesn't need to be traumatized by some stupid rules. So in that aspect Kernan's got bottom marks. Everything else was very well done. Andrew is terrified of the mask so they agreed to put in an IV while he was still with me. We had a bit of a time getting it in but at least Grammy and I were there to hold him. When they saw how scared he was to be rolled away in the bed, the guy picked him up and carried him. Drew needed some O2 post-op but that is normal for him. Once he sat up (wobbly though it may have been) there was no keeping him down. He drank his soda, asked for a wheel chair and helped take his IV out and was done. The nurse promised me that he would be asleep as soon as he got in the car. He talk and told stories all the way home and made up a list of at least 37 things he wanted to do when he got home. (Time's awaisting, you know!) He is still wide awake and playing with his new bowling set and keeping everyone busy feeding him. He is in no pain yet. You would never know anything had happen to him this morning except for the big wrappings on his hands. We get to go back in a week and get them taken off. We were very lucky that he didn't get sick to his stomach after this surgery-he always does. He came home and ate-crackers, carrots,a bag of popcorn, 4 chicken nuggets, chex-mix, chicken and rice (Thank you Miss Elaine!!) corn and animal crackers!!!! I think he only stopped then because it was time to go to bed.
In the evening he got me to take him on a walk and ended up playing with the neighbor children. Their parents couldn't believe that he had just had surgery this morning.
The dr said the left nerve was very thick (I am not sure if that is the way it is supposed to be) but the right was very strange and thin. He didn't know why. Anyway, he said they are both released now and what ever healing can take place, will. I might get a clearer picture of what was done when we go back.
Thank you for all your prayers. PLEASE sign the guest book. It really means a lot to us. Love, Anne
Wed. June 25, 2008
It has been so long since I updated I think I will do it by months.
First some Andrew funnies~
"Mommy, how old were you when you were little."
He was asking me about something that happen a long time ago and he asked where he was and I said "you were not born yet" and he said "did you miss me mommy?" If he misses school etc, he loves to ask if his classmates, teachers, etc will miss him or even cry.
He told me the other day, "when I grow up I am going to Chucky Cheese all by myself. I am going to have a jeep and you can come too." I told him I didn't like Chucky Cheese and he said "I will take you to Wal-Mart and then I will go to Chucky Cheese, after I drop you off."
"I get married one day. One day I'll be a prince and marry you mommy" Things like that really tear me up because I see him making plans to be like everyone else-like getting married or being a father, driving, owning his own house, and how likely are those things to happen?
His favorite saying about doing anything new ~"I will be a little nervous"
APRIL~~
Soccer started on April 5. It was a day of mixed emotions. I woke up at 6:30 and practically worked myself into a panic attach by 7:00. What if he wouldn't even stay on the field, what if he tried to hug everyone, what if we had a team of "soccer parents" that were mean and competitive, and who's smart idea was this anyway? Andrew did better and worse than I hoped. He slept late and Hannah woke him up and carried him out to the living room, where he promptly threw-up EVERYWHERE! It was a great start to the day. (he had been throwing up in the morning-No Idea!) I was in tears by the time we left the house. Memories of missing Hannah's first soccer days, while I was at Duke, filled my mind. Because I missed her's, Andrew could have this day. It was more than I could take. He didn't listen as well as I hoped. He was not as small as I feared. He has more skills than he could have had and all the parents seemed nice. He did better once they played a game towards the end but got really worn out towards the very end. Practices are an hour and 1/2.
He continued on like that most of the season. Not listening too well at the beginning and picking up towards the end but he became less willing to get in the heat of the "games" as time went by. May 17th Andrew had his best game EVER!!!!!!!!!!!!!!!!!!!!!!!!!!!! He ran around the white line at the beginning (like he never has), he went in and out of the cones and back PERFECTLY!!!, he played red light-green light, and sharks and minnows and he played in the game some. Everyone noticed and was cheering for him. It was our day to bring snacks and I told him before we left, that if he didn't listen and play, he couldn't hand out his snack. That must have done it. All the parents were telling him how good he had done. It was great. The coach was fantastic and Andrew enjoyed it so much that he asked to sign up for fall soccer as well!!
Jeff had cateract surgery on April 15. It was such a relief because it was really driving him crazy. He now doesn't wear glasses except for close-up. He has a contact in his "bad" eye to even out the difference.
May~~Lots happen in May!!
We got to visit Jeff's sister Pat for Mother's Day. Most of Jeff's side of the family was there. Ashlea our niece arranged to come and spend the night with us before she got shipped off to basic training for the Navy.
Andrew visited the dentist and did the best he has ever done. He allowed them to clean his teeth and put on the florid. The dentist even got his spacer out without having to put him to sleep!!! They pointed out a loose tooth to him and the next day he pulled a tooth out.... it wasn't the one that had been loose but it had a tooth underneath, so it must have been ready.
He won the "Golden Table" award for Caring but, because of a dr appointment,he missed the luncheon. He was supposed to get to go the next time (6 weeks later) but unfortunately that was the day that he got sent home from school!!! First, he hit two people with his jacket and threw his puff-ball jar and then tore off his name tag. After that he hit someone else and then he could not get himself under control in the principal's office. I was so angry, frustrated, and embarrassed. Luckily Jeff was home to go get him. After a good hard cry, and long talks with my good friends, who very quickly came to his defense and assured me that it couldn't have been his fault! LOL Even if it wasn't true, it made me feel better. What a day!
Andrew had a lot of trouble behaving towards the end of the school year which led the folks at Chapel Hill to request that we take him OFF his ADHD med because in Hurler kids it can lead to aggressive behavior. More on that later...
We met with the ENT who would like to hold off on surgery until both his ear tubes are out. The hearing in his left ear is much reduced and it is driving us all crazy. We hope to have it remedied before school starts.
We also had his yearly school IEP. There was quite a lot of stress involved in it this year, as there was a ton of testing done that showed him to be below average and way below average, which is never heartening but true and then another test, which we and Duke believe to be inaccurate, that showed him to be mild to MODERATELY RETARDED. We asked for more classroom coverage and got 30 min. We also had a very nice meeting with his new teacher. She is very enthusiastic and eager to learn about his condition. We hope this will lead to a great year.
The Great Boonsboro Carival came to town and entertained all.
Hannah was honored by Maryland Delegate Chris Shank coming to her school to present her Battle of the Books team with commendation on May 30th
June~~
School finished out the second week in June but not before several field trips and Fun and Field Day, that Andrew enjoyed. We have been busy going to the local lake "beach" for the first time since transplant~ Dr K gave her ok. I think she got tired of me asking every year.
As I alluded to earlier, after school ended, we took Andrew off his ADHD med. It has been a nightmare. We spend most of our day yelling and he spends most of his day in his room. He has become very creative at discovering new ways to get in trouble. He doesn't have a mean bone in his body but in his attempt to be "helpful" there is no end of trouble he can get into. On a positive note, he has been eating us out of house and home (which can be very nerve racking when you have to prepare food for all his waking hours) This will not last long. We can't take him to church, stores, friends and it takes an octopus to control him on outings, such as today's dr visit!!! HELP!!!
Andrew is scheduled for carpel tunnel surgery July 1st. We have done his blood test and pre-op this week and met with the anesthesiologist today. He will be in casts for two weeks. Wish us lots of luck.
Thank you to our wonderful guardian angel for the movie tickets. That was soooo sweet. We will be enjoying them after Andrew's surgery, when entertainment is limited by two wrapped hands!!
Lots of love to all, Anne
Read Journal History
Hospital Information: Home!
102 Grove Ln.
Boonsboro, Md, 21713
301-432-5745
Links: http://www.mpsforum.com A group of MPS families and friends that discuss all kinds of subjects
http://www.caringbridge.org/ct/oursonryan Alyssa - a sweet little girl who has Krabbe (and her brother Ryan)
http://www.caringbridge.org/fl/ryonspage Ryon- Andrew's best friend from Duke
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