Angelman Syndrome, Life as an Angel

Sunday, February 15, 2009

Well, things are going great here! Brady has been sleeping so much better lately, just hoping it lasts. School is going great for him. His teacher told me Friday that Brady now recognizes the number 1 and 2 and is using his communication device appropriately most of the time. They have been working no his name, he is doing great with that as well. He totally loves school and cant wait to get there every day. When I ask if hes ready to go to school, he shakes his head yes and pushes me out the door. Even when I don't say anything but am getting him dressed, he gets so excited, he knows where hes going. When we get to school, he pushes me out the door, and goes to his desk to work. My mother n law laughed and said that the would be the first male from our family, to actually love school,lol.
Brady is also doing great at home, his behavior has calmed down so much. He is learning in leaps and bounds, some things good and some things not so good. We now have to not only keep doors shut, but keep them locked as well. He has figured out all the door knobs now. I'm sure it wont be long before he figures out the locks, but we are just taking it day by day for now.
Brady also figured out how to stand on toys, to reach over things, and climb on things, so that is a new challenge for us. I dreaded the day that he figured out how to stand on objects, to do things he shouldn't be doing.
He has also learned how to change the channels on the TV, but we have to be careful that he doesn't order movies :) He loves turning the surround sound on, as loud as it will go. Guess were going to have to keep it unplugged. Its not a pleasant sound for his dad to wake up to, in the middle of night. I'm not sure why, but Brady thinks the TV has to be on at all times. The first thing he does is try to turn it on when he wakes up. If he cant get it on, he brings me both remotes, to turn it on for him.
Another cute thing that he does lately, is when he wants chips or anything that we might be eating at the moment, he goes over to his play room and gets any kind of cup or bowl that he can find, and has us to put food in it for him.
He really has ways of letting us know when he wants something, he is a smart little cookie. Now we just have to get the potty training thing going. There is no reason why this kiddo cant be trained, he is fully capable. Maybe since its getting warm and there will be fewer clothes, we can get training off the ground.
One last thing that I want to ask everyone to do, is say prayers for all of our Angels and their families who are sick, or going through difficult times at the moment.
We have one that has now gotten a trachea and cant gain seizure control, one that has been diagnosed with a relapse of cancer, one that is having terrible seizures and her dad has been diagnosed with a relapse of cancer, one that is having kidney problems as well as major seizure issues, one that is having med troubles, seizure troubles, shaking and lethargy, with no known cause and last but not least, we have an Angel in a drug induced coma, suffering from terrible seizures. So I ask that you pray for all of these families that I have listed and pray for those that I might have missed. They all need all the prayers and support that we can give them. Hold your loved ones close and be thankful for good health and for every day that you are able to spend with them and remember those who are not able to do or say the same.
Well, not much else happening here. I will post more updates as they come.

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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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