Angelman Syndrome, Life as an Angel

Thursday, October 02, 2008

Hey guys, sorry I haven't posted in a while, its been crazy here. Not much going on here, but I will start with today. We took both boys to the neuro, Brady for a check up and med reduction and Peyton for his headaches. The visit went well, but I wont say it was uneventful,lol. Brady got a good report, we are now weaning him off a second med, Keppra. We will be dropping the dose every 2 weeks until hes totally off this med. He is currently taking 1000mg, so its going to be a scary time. We are nervous, but we know that we have to go for it, otherwise we will never know if its possible for him to be off of this med all together. Were looking forward to the decrease, as this med does cause major aggression issues for our little guy. I will keep you all posted on how it goes. Brady was really sweet during the visit, he just couldn't wait to get his hands on the doc :) Brady made him stop working on the computer and give him some love. Of course Brady managed to swipe the docs stethoscope and had to taste of it. He even demonstrated how well he could throw things, but he only did it one time, so that was an improvement. As for Peyton, he is going to be trying a new preventative med for his headaches. He is going to be taking a low dose of the med that Brady just came off of, Topamax. He isn't crazy about being on a med, but he deserves to be free from these terrible headaches. We are also going to be taking him in for an MRI, just to check things out. Peyton was a hoot during the visit. Most of the time he is very quiet and has somewhat of a dry sense of humor, but not today. He totally cracked me up at one point. Peyton was sitting on the table messing around when an alarm went off in the hallway. I looked at him and said uh oh, you done it now. He said that he didn't do anything,lol. The doctor looked up and said oh no Peyton you have done it, were all going to go up in a mushroom cloud now. Peyton quickly and seriously responded, ummmmm its not a mushroom cloud, its a cumulus cloud,lol lol. I just laughed and told the doc that since Peyton had started science, he seems to know everything about anything,lol.
The day was good over all. We went to our favorite restaurant to eat, keeping in mind that this is more than an hour and a half from where we live and we haven't been there in over 6mths. Anyways a waitress there, not our waitress, comes over and starts chatting to Brady, saying that she remembers him and that he is so sweet. I was so impressed that she would remember him, having only seen him one other time, months ago. I guess it just goes to show the kind of impression that our kiddos leave on people :) We also met a lady at school this morning, when I went to pick Peyton up, that remembered Brady from the store yesterday. She was telling his ST how she had met him and that he wanted to go home with her, and that she kept running into him everywhere she went in the store. She just kept saying how social and how sweet he is.
Anyways everything else is good here. Brady still has a bit of a cold, but he is handling it well. We have been trying some potty training, but not much luck so far. He has a potty in the room with us now, since he has learned to do nothing but flush the regular toilet over and over. He refuses to do anything on the toilet, other than keep flushing, he just loves it. Anyways he took his diaper off one day this week, climbed up on his potty, with the lid closed, and peed. So he did pee on the potty, that was good, but unfortunately it wasn't in the potty,lol. I did cheer for him, since he at least has the concept down. Were going to keep working on it, I know he will do with when he is ready.
He is doing great in school! He is learning so much, in the short time that he has been there so far. He loves interacting with all the other kids. We visited with Peyton's class on Wed, when I stopped in to pick Peyton up. The kids are amazing with Brady, they love him and he loves them. They were all gathered around him, taking turns holding his hands and high fiving him, it was to cute. The especially loved it when Brady was patting Peyton on the head and yanking on his arms. The more the kids giggled the harder Brady patted,lol.
Brady really is coming out of his shell these days, its so much fun. He is doing so many new things, its hard to fit them all into one post. I will post as much as I can remember, as I remember it.
Hope you guys are all doing well. I will have new pictures to post in a couple of weeks. Were taking the boys camping and to the Seafood Fest, so it should be loads of fun.
I'm tired, so gonna hit the hay tonight, its not often Brady is sleeping at 10:34pm, gotta take full advantage. Night guys!

P.S. I almost forgot to tell you guys that Brady called me a bad name tonight! He was ticked off because he wasn't ready to get out of the bath. He kept walking around me after I sat down, saying "mu mama", it finally hit me that he was calling me a "mean mommy",lol!! So what if I'm a mean mommy, I'm such a proud mommy right now!!! I bet there aren't many people that get to brag about their kids calling them mean Mommy's, whooooo hoooo!!!

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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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