Angelman Syndrome, Life as an Angel

Tuesday, May 12, 2009

Well guys, its getting close to walk time!! Hope all of you will come and walk with us, as we walk for a cure! Things seem to be coming together in our planning. I have to say that even though we live in a small town, the people and businesses here are so very generous. So far we have managed to get nearly all of our refreshment items donated. So a big thank you, to all of you who have donated money or items for the walk!! We also managed to get a local business to donate the signs for our walk, so a big thank you, to them as well. For anyone who wants more info about the walk, please feel free to contact me. We really are going to have a blast this year, so come join us!
As for Mr. Brady, he is doing really well, but has been a bit off balance today. He has fallen down a couple of times, and there have been several times that I managed to catch him before he fell. I have been a bit concerned, because he fell yesterday, and hit his backside on the boat trailer hitch. I know that it had to have really hurt, as he cried real tears, which is not normal for him. Today he has a scrape and small bruise. I think that the balance problem, might be from being sore. Hopefully he will be better by tomorrow. He has a big walk coming up this weekend, so we cant have him stumbling around for that :)
He went to school today, his teacher said he done really good. He got to play with several other kinder students during circle time. His teacher said that he interacted really well with them, they all seemed to have a good time playing together. I know many people wont understand our excitement, but it is a big deal for us.
We did start the day off with a bang this morning though! We had a visit from our nurse case manager and the lady in charge of his waiver program. While I was talking to them and signing papers, we noticed Brady playing with something on the bottom of his foot. He kept touching his foot, then smelling of his fingers. We quickly realised that it was poop that was on his foot, and now his hands and legs :( I cleaned him up, and cleaned up the poo foot prints all around the room and went to change his diaper, but it was clean. We finally realised that one of the ladies had stepped in poo in the yard, and tracked it in. Sometime when Brady was playing with and sitting with her, he managed to get it on the bottom of his foot and it just went down hill from there,lol. What a great way to start off the day!
The only other major malfunction that we had was this afternoon, after school. I decided to do some house cleaning, which is extremely hard for me to do, with Brady home. But I was determined to get some things done here, so gave it my best shot. While I was cleaning up Brady's brothers room, Brady sneaked to the kitchen, and poured a whole thing of cooking oil, all in the floor, on the counter and on the stove. Then he decided that he needed to play in, stand in it, and smear it all over the place! I very carefully, took his hand, and walked him back to the bath tub, for the 3rd time today. He was slipping and sliding all over the place on the way,lol. You can just imagine what a mess the cooking oil was to clean up. With my hubbys help, a roll of paper towels, spray bottle of pinesol, a mop, and shimmy cloth later, we did manage to get most of the grease up. We even had to pull the stove out and mop under it! Somewhere in the midst of my cleaning frenzy, I ended up loosing 2 rolls of toilet paper, thanks to Mr. Brady throwing them in the toilet! What is up with his obsession to throw things in the toilet! Oh well, at least I can say that we never get bored here :)
Anyways, that's about it for my day. I am exhausted and looking forward to bed. I pray that Brady stays asleep!!!! Night guys............

posted by angelwings @ 10:35 PM 1 comments

1 Comments:

At 6:36 AM, Paula said…

Mercy...eventful to say the least. Carmyn does not get into all that yet...no because she doesn't want to but because she doesn't walk yet...But it DOES sound like my typical 4 year old.. He is into EVERYTHING!! Kids either age us quicker or keep us younger....I think that verdict is still out...HAHA

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What is Angelman Syndrome?

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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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