Angelman Syndrome, Life as an Angel

Friday, May 21, 2010

Hello! Its been a little while since I posted, so hear goes. . .
Brady is doing well, finally. He has spent the last, nearly two weeks, sick with some kind of infection. He was having major spells of coughing and just a low grade fever on and off. After a week on omnicef, with no improvement, we started a new antibiotic. He is nearly finished with that one and doing lots better. We have been seeing a lot of staring spells/absent seizures, but are hoping that these will get better as he gets over his sickness. He had his first day back at school today and done really well.
As many of you know, we attended the Angelman Syndrome Walk-A-Thon in Nashville this past weekend; it was amazing! I dont think that I have ever seen so many Angels in one place. Words cannot begin to describe the joy that all of these individuals and their families bring to my life. We met so many phenomenal families while we were at the walk. The thing that struck me most was how so many people, from all walks of life, were brought together for the same purpose. When we do these walks, we are not students, homemakers, lawyers, doctors, or singers; we are just people who love our families. We all share many of the same challenges and recognize the same simple joys in life. Anyway, as I said, Nashville was great!! The people in that city are all so warm and friendly, despite everything that they have been through with the floods lately. We are looking forward to next years walk and especially to meeting up with our extended Angelman Family again.
Now for the most important part of my post! ITS BRADY'S BIRTHDAY TODAY!!!!!!!!! Whooo hoooo, my little man is 8yrs old today! I know that some people may not fully understand just what this day means to us, or just how special it really is. At 1am this morning as I worked on my BIO final, I realized that my Brady had been 8yrs old for nearly an hour. I could not help but to reminisce over the last 8yrs of our lives, and think how blessed we are to still have Brady in our lives. So many times,Brady has been in the hospital or in seizure status, and we had to wonder if he would make it through. Last December when he was in the hospital, there was a point when I truly wondered if I would be leaving the hospital without my precious boy. Thanks to God's amazing love and grace, we did bring our sweet boy home. Thanks to God, Brady made it through each and every struggle and is still with us today. I can truly say that Brady's 8th birthday really is a miracle!I pray that we have many more birthdays together and that God continues to lay his hands on our little Angel. Brady Boy, we love you more than words could ever say (sniff, sniff). . .
Anyways, moving past the mushy stuff. I'm off to post pics from the walk, and some videos of Brady birthday shopping. Enjoy :) :)

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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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