Yep there he is scorching his favorite nurse!!! Its a good thing he is cute or he wouldn't make it our of BOSTON alive. LOL We had to take this picture. Zach in his Yankees jersey while Daniel had her Redsox shirt on.
Well on Good Friday April 10th we headed back to Boston for another post op apt for Zachary. Well we did good on time getting there and no traffic problems. We went in for our first apt with genetics and didn't even wait to see the Dr. We get in there and Dr. Stoler comes right in and says she is very sorry the results are messed up and she requested they relook at them. I was kinda bummed but glad on the other hand she didn't settle for what the results where. She wanted deeper info.
Anyway what they said was some of the biopsies came back negative for the chromosome deletion while some had it. She said its confusing but on the other hand would make sense because he doesn't have all the features/issues that if he had the true deletion. So she said that does show there is a flaw somewhere. Where we still don't know. She asked the research lab to go back over it and she will get back to us.
On the other hand she said she had gone to a seminar and they where discussing the syndrome Zach has and they highly suggested that she turn the info in for research because there is very few cases (aprx 5 she said) and they can grow off of the info. So she asked our permission to use Zachary in the research and will keep us posted to as what they find. All I have to do now is take some more pictures of him and email them to her for his folder on this research. She was going to do it, but we didn't want him to upset/agitated for his next apt. with the ortho when we got out of there.
We then went to his ortho apt and they took his cast off. He wasn't to happy with that but let me tell you its so nice know. He has a brace on his leg and starts PT tom. morning. YEAH!!!!!! HOpefully it will help with the muscle spasms that he keeps having. All the way home he had terrible spasms.
What would normally take us 5 hrs took us 7 hours to get home. It was a combination of backed up traffic, his pain/spasms and rain. We had medicine to give Zachary but it really makes him worse. Its the Valum that makes him hallucinate, but I couldn't not give it to him to try to help him. He would sleep for about 1 1/2 hr then wake up hallucinating and screaming in the car. It would take about 20 min. to calm him down then he would fall asleep and start all over again.
Yesterday was Easter and he was actually really good. He only had a few spasms and actually wore his regular khakis with the immobilizer over his pants. It was so nice to see him dressed up again. Other than that, nothing new here. We go back to Boston in 2 months (because Dr. is on vacation in 6 wks when she wanted us back and the 7th week I have school so that put us at 8 wks). Here are a couple pictures to enjoy.
Zachary & his 2 grandmas. Nonnie Judi & Great Grandma
Marissa with her Easter loot from Nonnie Judi's. Really how many baskets does a child need? At our house the Bunny only leaves 1!!!!!!!!!!!!!!!
1 comment:
Hi from Germany,
I found your blog by chance.
My son, Fabian, age 10, is wheelchair bound since he fell from a tree two years ago.
It was a very hard time for all of us after Fabians accident. The moment when the doctor told us, that Fabian is paralyzed and the moment when we must told him that he never walk again, was so terrible. Especially terrible was the day, when Fabian got his first wheelchair. I still cry when I saw him sitting in his wheelchair at the first time.
But Fabian is so brave! I am so proud of him.
Since his accident Fabian visits a school for special needs kids. All other kids in his class are disabled, too. The most kids must use a wheelchair, tree kids can walk with a walker / quad canes.
Every Saturday Fabian visits a sport group for children in wheelchairs. Two hours they play together in their wheelchairs. It is so funny for the kids.
Two month ago he got a new “Spidermann”-wheelchair.
If you are interest I will send you some photos of him in his new wheelchair.
I will be glad about a short answer mail.
Best wishes Katja
(Katja.Kretzler@web.de)
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