Angelman Syndrome, Life as an Angel

Thursday, March 20, 2008

Just wanted to post a quick update. We went to the neuro today,it went very well. I think he must have been as excited as we are,with Brady's progress and overall appearance. He said that Brady looked great,and considering how well he is doing at this VNS setting,he isn't gonna do anything else to it,for now. We are going to keep the setting the same and see how it goes the next three months. If all goes well,we will start weaning him off of the topamax at that point. He was so excited about Brady sleeping through the night now. He said he normally doesn't like to tell the parents "I told you so",but in this situation,he was so happy to be saying that. He was just so positive that the VNS was the way to go for Brady. He knew that we were hesitant to begin with,so that's when we started the depakote. He did that to basically,keep Brady out of the hospital. I think he knew that it was going to take the VNS to finally get things under control. He also agreed with me,that Brady was most likely having seizures at night,causing him not to sleep and was probably having many others that we weren't seeing. So I am really relieved that we went with the VNS,even though we were pretty nervous about it. He did use the little computer to check the VNS,all looked well with it. He also used the magnet to show us how to activate it,our first activation with the magnet. Brady done so well with it,he just giggled when he felt it going off and was looking at his chest,it must have tickled. When the device is activated with the magnets,it is stronger than when it activates at the scheduled times. So if we have a seizure we can activate the device instantly,wait a minute and if the seizure doesn't stop,activate again,we can do this 5 times in a row,which would equal 5 minutes. After 5 minutes of seizing,we would give diastat,same as usual after 5 minutes. Were just believing that we wont have to use the diastat anymore (fingers crossed). Anyway as I said,overall it was a great visit. I will keep you guys posted.
I do have to tell you all what happened at Chucky Cheese's last week,forgot to mention in my previous posts . Brady of course hung on Maw maw all night,wouldn't get down and play at all. But he did really seem to enjoy all the action happening around him. Anyway we were heading out the door to leave,letting the girl check out stamps to make sure we weren't stealing any children,lol. Anyway as we were making our way out the door,I looked back at Brady,he was holding Maw maws hand,and his pants were down around his ankles!!!!!!!!!!!!!!!!! I swear,I thought I was going to bust a gut laughing!!! Finally the rest of the family turned around to see what was going on,and we all must have looked a sight,standing there with Brady's pants around his ankles,all of us laughing like mad. I don't think that poor girl at the door knew what to say,I think she was trying not to laugh,but she couldn't hold it in. Brady of course,thought it was pretty darn funny,lol lol.We were all in a single file line,so Im not sure how long Maw maw was dragging poor Brady along with his pants on the floor.
Anyway just thought Id give you a laugh. I will post more later. Nite all

posted by angelwings @ 8:20 PM 1 comments

1 Comments:

At 2:47 AM, Unknown said…

Steph! I am so glad that Brady is doing so well. I have been thinking of you all a lot! Post some new photos girlie!! I wanna see Brady's new rested look! Love the Chucky Cheese story! Love you guys! Take Care!

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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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