Angelman Syndrome, Life as an Angel

Friday, August 08, 2008

Well Brady's ear has been bleeding on and off since our ER visit a week ago. This afternoon it started bleeding a lot so I took him to the Ped. I noticed in the office that it had a strange smell,which really worried me. Anyways the doc isn't sure what is going on with it. We suspect that he either still has something stuck in it,or that he could have possibly done damage when he stuck something in it,and it could be getting infected. He was outside when it happened,so we have even wondered if a bug flew in his ear. If it doesn't get worse and he doesn't develop a fever before Monday,we will then go and let them sedate him,so that they can go into the ear and find the problem,and clean it out. If it does get worse before then,then we will go to the hospital and go ahead with the sedation.
On a good note,he had a blast at the doctors office,lol. It was an adventure,as it always is when he goes out in public. He made lots of new friends and had a ball with the staff. He had them snorting and cracking up,with him.
As for the rest of the week,we have been for an Augmentative Eval,to determine whether or not Brady got a communication device. Lets just say that he wont be getting one from them. He totally bombed the eval. He wouldn't do anything they wanted him to,he was very distracted by all the other people in the room. They wanted him to play a game, Simon Says,which hes never heard of,and they wanted him to use pictures and devices hes never seen. If he had been in the mood, I think he probably could have done it,but he wasn't the least bit interested. He was more interested in taking the devices apart and playing with everyone there. Oh well, life goes on. We know how smart he is,and know that if he doesn't want to do something,he wont. Hopefully we can get him on the right track when he starts school. Of course he wont be starting Monday with everyone else,as he will be under sedation at 8am that morning :( Were going to miss big brothers first day,we wont even get to see him off. Yeppers,never a dull moment here.
Were getting ready for our Angelman Awareness Booth on August 23rd. I must say that I have been slacking lately,so we have to get some ideas together as to what we want to do.
Anyways gotta hit they hay,we have 4th grade orientation tomorrow,then were taking the boys out of town to play. We were heading out to go camping tomorrow,but our camping partners had a bad car accident today,thank goodness they are ok,just a bit sore. Then of course we cant take Brady in the water with his ear as it is,so were just gonna go play for the day,not sure where we will end up. I will take lots of pictures for you guys to see :)
Will post more later.

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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.

See my complete profile

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