Angelman Syndrome, Life as an Angel

Sunday, July 06, 2008

Well,were still having puter troubles here,so sorry for the delay in posts. Hopefully we will have it all fixed this week.
Anyways Brady is doing well,his nose finally stopped bleeding on Thursday. He had a little drainage today,but nothing bad,so were keeping our fingers crossed.
Everything else is going good,its been a busy 4th,but hes enjoyed socializing and the fireworks.
He hasn't been using his new potty chair much lately,but he did pee in the potty,standing up like a big boy!! Of course he thought it was so cool.
We went to town today,he was really good in the store. Me, Peyton and Brady were walking out to the van,and I didn't notice that Brady had lost his shoe. He was limping across the parking lot with only one shoe on. Peyton says uhhh,mom look at his foot,lol. So I turned just in time to see a car run over Brady's shoe in the middle of the drive :0 Anyway Brady totally cracked up,he thought it was the funniest thing ever. The shoe was ok though,so he now has a matching pair again,lol.
Brady did do something really cool tonight. We were all sitting at the table eating supper, well Brady decides to throw all his food and hit me in the head with it (thats not the cool part,lol). Anyway he was fussing and wouldn't eat,so I said to his dad that Brady wants a C-U-P, spelled it out so he wouldn't know what I was saying and go balistic. Well he starts shaking his head yes and clapping,he claps when hes saying yes to something. He actually knew what I was spelling!!!!!!!!!!!!
Anyway thats about all that's going on here. The med weaning is still going well. Hes down from 6 topamax a day,to 4 topamax a day.
On another note, we lost another Angel this past week. She got away from her parents and drowned in a local pond near the house. Please keep this family in your thoughts and prayers, this is such a terrible tragedy,I cant even begin to imagine.
Also we have 2 other Angels in the hospital with severe seizures and an Angelman sibling that was just diagnosed with Leigh's Disease and just got out of the hospital. So please keep all these precious children and their families in your prayers. I will post updates as they come. We just pray that God can bring these kiddos out of status and help the docs regain control over these horrible seizures.
Anyways will post more later.

posted by angelwings @ 11:29 PM 1 comments

1 Comments:

At 1:42 AM, Unknown said…

The throwing his food at you wasn't the cool part? LOL!!! So glad everything is going well. Josh sends lots of high fives to Brady for the food throwing! LOL!

So many to pray for on our list right now. It's heartbreaking. Our Angel families could use a break right now. We are praying for all the angel families every night and lifting up those in special need as well. Love ya girlie!

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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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