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Tuesday, August 30, 2011 |
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Well its been a little while since we updated, so thought we would take a minute to do so. Brady continues to do great, aside from a little tummy troubles for the past few days. We spent Saturday with some great friends, who just happen to also have a child with Angelman Syndrome. Sunday we had a birthday party at the lake, so it was a busy weekend.
Brady is back to his wild,happy little self. He has been breaking things, spilling things, stuffing our shoes full of paper and toys, escaping to the outside of the house, and playing in water every chance he gets. He is back to socializing and making new friends every chance he gets. We really didnt realize how docile he had become before he went into the hospital this last time. I guess that when you are with them all the time and they change so gradually, you just dont notice it as much. While I did sense that something was wrong with him, I didnt realize how unsubtle the changes really were. I can truly say that "he is totally back" and is keeping us on our toes now,lol.
As for our contest with Vivint, they will announce the winner on Sept 6th, but I think we got this ;) Cant wait to be able to move forward with clinical trials for an Angelman treatment!! Big things are going to happen very soon!
We met our new neuro/epileptologist last week... she was very nice. She was pleased with Brady's progress so made no changes to his current treatment. She gave us some tips on how to prevent Brady from slipping back into status, so hopefully this will prevent any future hospital stays/comas.
Lots of exciting things coming up in the next few months!! We fly out to Boston October 17th to meet our new Angelman/Epilepsy specialist, then head to Nashville Oct 20th for the Bella Bash. In Nov we head to Mississippi for an Angelman get together and then we have to start getting ready for our Angelman Walk in Pensacola! Yes guys, we are having an Angelman Syndrome Walk-A-Thon in Pensacola Fl! We are super excited to get this thing started and hope to raise tons of money, so we expect to see all of our friends, family, etc, there May 19th! Cant wait to see old friends and make new ones!
Anyway, time to get my pix uploaded. Will be posted some here shortly! Hope you all have a super duper day! |
posted by angelwings
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2:19 PM
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| 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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Interactive Seizure Diary |
This
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The AS Forum was created in April
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The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
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