Angelman Syndrome, Life as an Angel

Friday, March 14, 2008

Well,we are back home. Brady's surgery went great. He came through like a trooper,no complications and very little pain meds afterward. He was a touch cranky when he first came out,but most likely because he was still a bit groggy from being put to sleep. They ended up up doing the previous version of the VNS battery,which is a little bigger,but the smallest,latest one,has been recalled,very recently. So if he had gotten his surgery in Feb,he would have gotten the recalled one,scary!!! God has a way of working these things out for us. You can see the outline of the batter on his chest,hes so skinny. But it doesnt look nearly as pronounced as I thought it would.
Anyways,Wed night his IV kept causing the pump to alarm,so instead of putting a new one in,they opted to just take leave it out. Brady was so glad to get that IV out,it meant freedom,lol. He went straight to the sink in our room,when I would block that,he would go straight for the bathroom. He was running all over the room. We took him for a walk in the wagon,which he totally loved. He is such a people watcher,I think he could just sit and watch the people go by,all day long. Not to mention that we were on the third floor,so we could look over the balcony at the big water fountian,and that was the view from our window as well. We also got to play with Cooper,he as a big brown labrador retriever that comes to visit the hospital. I have to say though,Brady was more interested in the lady doc that was playing with the dog,lol. He made friends with everyone,and tried to visit everyone elses rooms. Brady ended up sleeping all night. If course he has to wear "no no's". They are a type of ortho brace,on his arms,keeping from being able to bend his arms,and mess with his bandages. He has managed to take them off,but at least it takes a while. He was taking them off without even undoing them,but now has figured out how to get the velcro undone,which is amazing seeing as how he cant bend his arms at all. So we have gone to plan C now,the velcro straps have tape over them. We will see how long this fix lasts. We did take the no no's off tonight for his bath,and had to fight him the entire time,he was trying to rip the bandages off of his incisions,thank God for no no's!!! I have got a laugh out of them though. We forget that he cant bend his arms,and give him a cup,or something to eat,and he just sits there,leaning his head forward with his mouth open and tongue out,but cant get them to his mouth,lol. He is so patient with us though,he doesnt fuss,he figures we will realise it soon enough. I gave him some cheerios this afternoon while I cooked supper, he just poured them out and was stomping around on them. Craig came in and told him to eat his cheerios. In a few mintues Craig said,Steph,he cant put them in his mouth!!! We both started cracking up,and so did Brady. Craig said Im sorry you have dumb parents man,but were the only ones you will ever have,so just hang in there,lol.So we took a no no off,and Brady was happy to eat his cheerios,lol.
Anyways we hung outside most of the day today,Brady's idea. He has been enjoying being outside,so much. He acts as if he can bend his arms just fine,and as if he hasnt been through anything,he is one tough little cookie,so much tougher than his mom.
I really dont ok before his surgery,but after they had him back and hour,I said ok hes been back long enough,its time now! I literally got sick on my stomach,because I was sorry worried about him.
As for his device,I believe they said it is set to go off every 5 minutes,for 30 seconds at the time,but they did increase it just a touch before we left,so it might a little more than that now. He did notice it a little bit at first and would swallow hard about 3 times when it first started,but he quickly got over that and doesnt seem to be bothered at all now. I do notice him drooling quite a bit now,could be from having the tube down his throat though.
We go back to the doc in a week for an increase,and then I think it will be every 2 weeks after that. I think they are going to start taking him off of the topamax pretty quickly,so were keeping our fingers crossed. We know it will take about a year for this thing to reach its full potential,so we just have to be patient.
Well thats about it for now,I have to get back to Brady. I did get some videos of him,just have to figure out how to get them to here. Im going to do that after this post,so keep checking back. Thanks for all the thoughts and prayers guys. HUGSSSSSSS

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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.

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