Angelman Syndrome, Life as an Angel

Sunday, April 20, 2008

Well,we had a good end of the week,and weekend. We went camping with some friends Thursday and Friday. The kids had a blast,but we wouldnt let Brady submerge himself in the lake water,because of his incision sites. The one on his neck,actually started to look infected,so we had to get some cream called in to the pharmacy where we were camping. It is looking much better now though. Brady rode the jet ski for the first time on Friday,he loved it. He was waving at everyone on the shore,trying to stick his hand down in the water,and smiling from ear to ear the entire time,it was so cute. I think he could have rode all day and not got tired. We had a good time though. Of course his Bubba had a bicycle wreck when we first got there,and got a dilly of a bruise and scrape on his tummy. He boycotted his bicycle after that,lol. Brady didnt sleep well in the camper for some reason. He got up both nights in the middle of the night and was ready to play,uhhhhhh. We ended up coming home early,the weather was kind of cool and we were tired from wrestling with Brady. Brady broke our friends in right,lol. We havent been on a trip with them since Brady was very young,so they were amazed at how active he has gotten,lol. Everyone else was busy one day,so me and Brady were hanging around outside the camper,right next to the water. I was cleaning up a bit when Brady decided that he needed to go for a swim. I took off after him,but flash made it to the water before I could reach him. He bent down and put his hands in the water and mud. I grabbed him up and carried him back up the hill,he was steadily looking at his hands,then suddenly stuck them up to his nose to get a good smell,lol. He must have thought it was poo,it really did look like it,lol lol. Anyway it totally cracked me up and he got a kick out of it too. We met some pretty cool people while we were there,and got a chance to spread the word about AS,so that was great. We met a precious little 6yr old girl,that was very interested in Brady. She asked why he moved his arms like that,then about his scar on his neck. I told her he had Angelman Syndrome,which made him a very special little boy and that the docs had done surgery on him,to make him feel better,thats why he had a scar. She was so cute,she said just as serious,"can he turn his head",lol lol. I said yes baby he can,he can do anything we can do,other than being able to talk. But I explained that he does understand it when we talk to him,and that he loves to play with other children. Its amazing how accepting other children are,their so innocent.
Anyway we had another mom stop to talk to us,she has a son with CP,so she was very understanding about Brady.
Well thats about it for me,its been a long day,so Im going to beg Brady to go to sleep. I will post more later.

posted by angelwings @ 10:57 PM 0 comments

0 Comments:

Home Post Edit Post a Comment

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

Home Post Edit

I first, want to say thank you all so very much fo...
Just wanted to post a quick update. Brady is doing...
I got up this morning to read a heartwrenching ema...
Not much happening here,but I wanted to post a qui...
Well,we had a very eventful day today,lol. We star...
Today is a sad day for the Angelman community,as w...
Just wanted to post a quick update. Brady is doing...
Me,Peyton and Brady at Chucky Cheese,and no Im not...
Well,we just got back from Chucky Cheese. We had a...
Well,we made it back from the doc today. It was as...