Angelman Syndrome, Life as an Angel

Thursday, January 10, 2008

Just wanted to let everyone know that Brady got his tubes in this morning and is doing very well. He got up at 5am and has just gone to sleep for the first time,its after midnight now. Anyways hes been walking around like a little trooper today,I think hes trying out his new land legs,lol. The surgery went well. The doc said most of the infection was gone,but Brady had a thick,grey cement looking substances around his ear drums. The doc said that both ears were full of this substance and that it was a miracle Brady was able to walk at all. He also said that this stuff had been there for several months,and that Brady had to have learned to walk even though this stuff was present. It was making him really dizzy and his sounds were muffled as if he were talking under water,but he persisted and still managed to start walking,hes a tough little boy. I can see so many improvements with him already. His walking is so much more stable now,he is trying to learn to volumize his sounds,as they were muffled before,so they sound much louder to him now,its so funny to watch him listening to himself. Also he was walking tonight and stopped,bent down,picked something up and stood back up,without skipping a beat. Hes never been able to do this before. He also is back to being his happy self,finally. He has been smiling and playing with us all day,you would never know he just had surgery this morning. We never did find out what it was that he had,that was making him so sick,but it seems hes on the mends now. He has lost weight though. He went from 32lbs down to 28lbs. So we have to try and fatten him up,somehow. His appetite does seem to be coming back though.
As far as the VNS surgery goes,it is scheduled for Feb 6th,providing Brady has no infection what so ever by then. They wont touch him if he has any infection,as it can get in the wires wrapped around his nerve,and be very dangerous. Once the wires are wrapped around the nerve,they will never be removed,even if we take the device out,unless for some reason brady gets infection in the wires. If Brady does get sick,we will have to treat his illness very aggressively just to be sure that no infection reaches the wires to the VNS. Removing the wires risks causing nerve damage,which is a scary thought. We are also going to have the device placed on his chest,rather than under his arm. If we pick him up under his arms,with the device placed there,we run the risk of disconnecting the wires. Brady will be spending one night in the hospital after the surgery,hopefully they will activate the device at that time. We will go back down to the doc every 2 weeks to readjust the settings until we get them where they need to be. Once we have them set,we will start taking him off of his topamax and hopefully later on,some other meds. We are very nervous,but also excited at the possibility of getting the seizures under control and getting off of some of these meds.
Anyways, I will post more updates as time goes on.

posted by angelwings @ 12:45 AM 1 comments

1 Comments:

At 4:55 AM, Elijah said…

Good on you Brady glad to here from you r Mom that you can hear better and that you are go go go. This is exciting news to hear from Elijah's Family down under in New Zealand - will be praying for all to go well for the VNS plans as well keep smiling young man - Darren Julie and Francesca

Home Post Edit Post a Comment

What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

See my complete profile

Home Post Edit

Well Im not sure how much I have already posted ab...
Well since I have been neglecting Brady's blog,I f...
Well its been a busy Christmas! We had 3 celebrati...
Merry Christmas Comment Graphics
A night of haircuts and poop parties really tires...
Hi everyone!! I'm sorry I'm behind on my posts,Bra...
Well we went to the ENT today. Brady has a major e...
Just wanted to update everyone on how the docs app...
Just wanted to let everyone know,that were going b...
Just wanted to post a quick update. We are going t...