Angelman Syndrome, Life as an Angel

Tuesday, October 09, 2007

well,its been another exciting week here in our house.. Brady went to bed Sunday night,and was sleeping between Craig and I. About midnight,I felt him moving strangly so jumped up and turned the light on to see him seizing. We gave him diasat after about 5 minutes,but chose to take him on the ER,since hes having such a time with seizures lately,and because hes in the middle of a med change. They admitted him and we stayed up all night and all day the next day. He finally woke up and came alive about lunch time the next day. He was trying to rip out his IV and was getting wild. We knew at this point that the worst was over and it was time to go home by then. Plus we needed to get home and get some rest before we had to go to the neuro today. So we were released about 2pm. Brady is doing well,but has had a rough day today. We went to the neuro at 9:30am for an EEG. He was given meds to sedate him,but he didnt get to sleep,he was just extremely drunk. I have to say it was amusing watching him,lol. I never dreamed I would get to see my Angel drunk,lol. When the meds kicked in,he started laughing in this really deep voice,like an "ohhh I feel good" kind of laugh,lol. He would sit up and just fall back in the bed,and just laugh. He really had no cares in the world. So anyway they then gave him benedryl,which I explained prob wouldnt work,but dont think they believed me. Anyway this was all between 9:30am and 11am,and he has just now at 11:43pm,fallen asleep. He stayed pretty drunk most of the day,but the happiness wore off around 2pm. Anyway as I said,I warned them about the bendryl,and explained that the other med might not work as well. I think Brady really changed their outlook on things,lol.
So back to the appt,we did see the doc,with no EEG of course. We are increasing his depakote,yet again. Meanwhile,we have to make a decision as to whether or not we want to do the VNS. The VNS is a sort of pace maker,put in the chest,or under arm area,that sends off scheduled electric charges,to break up seizures. If he goes into status we can use a magnet to activate it and stop the seizure while it is happening. Were not sure what were going to do yet,we really have to think about it,and pray heavily before we make a decision. Anyways I will keep ya posted.

posted by angelwings @ 11:36 PM 1 comments

1 Comments:

At 11:20 AM, Anonymous said…

Your family will be in prayers as you make this difficult decision.
Love Deb

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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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