Angelman Syndrome, Life as an Angel

Monday, June 30, 2008

Well guys,it seems that my new lappy has crashed! I cant seem to get blogger to load on my desktop at the moment,so my posts might be few and far between for a while,but dont give up on me,I will post when I can,and we will be back very soon.
Anyways, as for whats going on here, its crazy. Brady has been having nose bleeds on a and off for a while now. They really escalated this weekend. He had several Saturday, 6 Sunday and 3 today. I took him to the ped,then the ENT today. They think his nose is just dry and irritated. They cauterized one side and said to come back in 2 weeks. Well he has had three nosebleeds since we got home, 2 of which were in the side they cauterized! I'm not sure whats going on, but hopefully nothing serious,and hopefully it will pass very soon. My furniture and his clothes cant take much more :(
Anyway our trip was crazy today. He had a nose bleed on the way to the ENT,so he was a mess by the time we got there. Then he decided he should potty in his pants as well! So we went straight to the bathroom to clean up the blood and poo,where he decided it might be fun to grab a handful of the stinky diaper! I dragged him to the sink with his pants still around his ankles and scrubbed his hands. We finally got him all cleaned up and dressed and got signed in. He met an older woman in the lobby and immediately made friends with her. He was playing with her as they sat on a step,well she fell all the way over backward,trying to hang onto him,thankfully she was ok. Anyways we went to the back to a room,where Brady refused to stay. He decided it would so cool to visit anyone and everyone in the halls as well as the other exam rooms :) He played with the nurses,stole their glasses,tried to work on their puters,it was great,lol. Every time I took him back to the room,he had to play in the sink,turn the lights on and off,he even stuck his fingers in the VCR! Anyways needless to say it was fun. But he done really great during the cauterization,I was shocked. He did try to blow the cotton out of his nose, then decided the piggy snort would be more effective,lol. But in the end we did get it done,even though it doesn't seem to have helped very much at this point.
Well thats about it for me,I'm beat,need a rest. I will post more as soon as I can,promise. Say a prayer for our little man,that his nose bleeds get better and/or we find out a cause for it,and that it is not med related.
Nite guys!

posted by angelwings @ 11:49 PM 0 comments

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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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