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Tuesday, November 27, 2007 |
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Well we finally got a date for the consultation for the VNS surgery. We are going in Jan 8th for the consultation and should get a surgery date then. I know it sounds crazy,but were very excited to finally see the light at the end of the tunnel. I hope and pray that this will get Brady off of some of his meds,or at least get the doses dropped. He is really thriving lately,but I know that these meds are holding him back,from reaching his full potential,and thats just so unfair to him. I want him to be able to get the most out of life,he deserves it. So hopefully this will be his big break.
He is still doing well,not sleeping so well though. We got to bed at 4:30 am this morning,in which I started coughing and had to get back up. Night before we got in bed about 4:15am. His sleeping seems to be taking a back seat to everything else these days. I really think that he is having some seizure activity when he does sleep,and its making him not want to sleep. when he is sleeping,I'm just watching and waiting for the big one. He will jerk for about 5 seconds,then suddenly stop. Then in 15 minutes or so,he will start again. He does this the entire time hes sleeping. So I know that hes not getting any rest.
I swear,this is one tough little kid. The things he goes through,and he still manages to smile and be happy most of the time. He also still continues to make tons of progress with his skills. I couldn't be more proud of my little guy,both of them for that matter. Big brother Peyton is so awesome. He really keeps a close eye on his little brother. He tells me all the time to let Brady go in the other room with him to play,and says he will watch him and make sure he doesn't have a sejure,as he calls them,lol. Peyton is so wise beyond his years,he is an amazing little boy.
Anyway that's my brag for the night,lol. I will post more later. |
posted by angelwings
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10:23 PM
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Hey Steph! I'm so glad that you have a date for Brady's VNS operation. I will be praying and thinking of you all during this time and praying that he will be able to come of some of his meds. It's wonderful that Brady is doing so well and he's going ahead like he is. That big brother of his, is such a good brother, I'm sure you are very proud of him. Hope you all have a great day!
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| 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
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Hey Steph! I'm so glad that you have a date for Brady's VNS operation. I will be praying and thinking of you all during this time and praying that he will be able to come of some of his meds. It's wonderful that Brady is doing so well and he's going ahead like he is. That big brother of his, is such a good brother, I'm sure you are very proud of him. Hope you all have a great day!