Angelman Syndrome, Life as an Angel

Sunday, December 21, 2008

Well, not sure if I've posted since Brady's two doctors appts on Wed, so thought I would update everyone. The first appt was with the neuro, he turned up Bradys VNS. He said everything looks great, and we will probably start weaning Brady off of the Keppra in January. We left there and went to see the Ortho, this appt also went well. Brady is followed by two Orthos, and both say he looks great, so were glad to know that.
Not much else going on here. I took Brady to town with me Friday,and it was an exciting, exhausting trip, to say the least. He was pretty good in 2 of the stores, but decided to show out in the third. He started out by trying to eat some batteries that I was picking through, for the upcoming Christmas toys. He then found some new sippy cups and decided that he must have 2 of one kind and 1 of the other. I tried to talk him down to only one cup, then to 3 of the same kind, but he insisted that he have 3 of one and 1 of the other. So I got tired of hearing him fuss, and gave in. We made our way to the food section where he picked out 2 bags of chips. So again, I tried to talk him down to only one bag, but he won. I ended up putting him in the cart, since he was a total wild man. I had to put the chips under the cart because he kept taking them out of the back. He ended up picking out some canned peanuts, Cinnamon rolls, mashed potatoes and canned spaghetti, all of his favorite foods. This kid really knows what he wants! Meanwhile he was grabbing the sippy cups from the cart, begging all the passersby to please put something to drink in his new cups,lol. We made our way to the check out, where he tried his best to convince the cashier that she should give him his bag of chips. She asked him if he was starving, so he shook his head yes. She told him that mommy wants him to wait til he gets home to eat his chips, so he then starts shaking his head no, over and over. He gave up on the chips, and took some time to adjust the credit card machine, then decided that he should try to get her to fill up his new sippy cups :) So Brady screamed the entire time we were in the store, other than taking some time in between to tell everyone that passed by "hey". We made it to the car, where I gave him chips, finally! I had to bring him home, put him in the chair and give him more chips, to make his stop screaming, so I could unload groceries. After I got them put up, I brought Brady and the bag of chips to the back room, so I could take some time to sit down and recoop. Well he decided that I wasn't getting his chips fast enough, and turned red faced, stomped his feet and screamed at the top of his lungs! This is all new for me, he has never thrown tantrums like this, especially never threw a tantrum for something in the store. Part of me is thrilled to see him expressing his needs and wants, so well. But a part of me is thinking "OMG, what next,lol" Oh well, I guess this is all a part of it. I just have to think of it as a developmental milestone. Needless to say, it was a very interesting trip to town,and I hope its never that interesting again :)
Anyway, Brady is doing great. His comprehension continues to get better and better. He now answers yes or no questions accurately, he can also answer some other questions, by using physical cues.
Tonight he went over the ball pit, got some balls, handed them to his dad and starting giggling. He was acting like he was going to run away. He wanted his dad to them at him. We have ball wars all the time, and Brady loves it. So he started his own war tonight. This kid has quite an arm on him.Its so great to see him interacting like this.
Well, thats about it for now. I'll post more updates later guys. Brady is sleeping, so gotta get to bed. Nite guys

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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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