Angelman Syndrome, Life as an Angel

Sunday, July 13, 2008

Well,things are finally settling down here,thank goodness! Brady spent the night with Maw Maw last night,and he actually slept all night! Of course he would make us out to look like liars,saying he wouldn't sleep at night,lol. Anyways he crawled up in the chair with his dad about an hour ago,and went to sleep,yey!! Im heading to bed shortly,looking so forward to sleeping all night.
Things really have been crazy here lately though. We had three girls staying over last week,when Brady decided to stop sleeping. I ended up having to take them home early Friday morning,as I hadn't been to sleep yet. Well Saturday my mom and I spent the day going from store to store,looking for Brady's pacifiers. He will only take one kind and of course we couldn't find them. Its amazing how his papi calms him down and helps him sleep. I was feeling pretty helpless last night,when I found out that this particular type of papi,had been discontinued :0 I finally found them on ebay, some people were actually selling them for $30,a pack of two!!! I guess they knew that if someone was looking for them on ebay,they must be desperate. Anyways, I did find a nice lady who had 14 packs and was able to cut us a deal for all 14 packs! She was even nice enough to overnight them,so hopefully we will have them by Tuesday. Brady has also picked up a nice habit of grinding his teeth, not good at all! I hope that the pacifiers will cut down on some of that,before he really messes his teeth up.
So I finally have the papi situation resolved, so I hope! Just pray they don't loose them in the mail,lol. Well, Saturday night when we were taking the boys up to Maw Maw's house, I backed my van into our old truck,that we use for working around the house. I could have cared less about the truck,but of course it messed up my van! Its not dented or anything,but it did leave big blue paint marks all over my bumper and tail light. I do like blue vehicles,but mine isn't supposed to be that color,lol. Oh well, I guess it could be worse. Finding Brady's papis later that night, made it all better,lol. Its amazing how important these things become when you haven't slept in a while.
Brady has been doing great today,hes been on the best behavior I have seen in a very long time. He has been entertaining himself and has been in the best mood. We walked out to the edge of the yard to speak to Maw Maw while she was picking peaches and Brady leaned over, kissed me and started to Maw Maw, he was telling me bye,that he was going with her,lol. Also when we were at her house this morning,he did the same thing,he kissed me and climbed up in her lap. I asked if he was ready to go and he shook his head no. He had done several other things today similar to this. His communication skills have been out the roof today. He has been following commands and even minding when we tell him no or stop. Oh and he cracked me up earlier. We have our pups in a fence under the carport,all 8 of them. Well Brady decided that the cat really should be in the fence as well. He picked the kitty up by his tail and carried him all the way over the fence and dropped him in. Well the kitty jumped out,so Brady patiently walked over,picked him up by his tail again,and put him right back. I was cracking up,it was so funny seeing Brady carrying that cat to the fence and dropping him in,lol. Of course Brady really got a charge out of it too,he cracking up, little monkey!
I really think that this is just a glimpse of whats hes going to be doing once hes off all these meds. I am fairly sure that he has been going through withdrawals this past week,causing him to act the way he has and interrupting his sleeping patterns. We will know more once we drop his meds again this coming up Friday. I hope that it doesn't have this effect on him again,but I feel like it will. At least he will be totally off of this one in August,so were just trying to hang in there until then.
Well thats about it for me, sorry for rambling on. I will post more later. Night guys!

posted by angelwings @ 10:02 PM 0 comments

0 Comments:

Home Post Edit Post a Comment

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

Home Post Edit

Well I can safely say,that all he double L has bro...
Well its official, I'm a bad mommy!!! As I was say...
Hey guys! Brady is doing great today. He had enjoy...
Well things are still going good here. Brady hasn'...
Well,were still having puter troubles here,so sorr...
Well guys,it seems that my new lappy has crashed! ...
Things are good here, Brady has had a great day to...
Well we finally made it back from Brady's neuro vi...
Well Dr. Brady felt the need to doctor something e...
Well,Dr. Brady delivered his first set of pups tod...