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Saturday, January 30, 2010
Update
Hey guys! Its been a while since our last update, so thought we would post a quick one. Brady is doing well. His seizures have subsided. He had a really good report from his latest EEG and doctors appt. His EEG showed that he is no longer in status, thank God. His sleeping continues to be erratic, but we are dealing. He has some good nights and some bad nights. He managed to go to school almost every day this week, so that is an improvement. Life is slowly getting back to normal, if there is such a thing. Brady has been showing much interest in signing and overall communication. He recently learned the sign for hungry, which he uses, even overuses,lol. He has been signing dog as well. He signs and then looks at his puppy, Bentley.
We are in the process of getting him the new Itouch Ipod with the proloquo2go software, so that he can communicate using the device. We are excited to see how he will do with it. Of course getting insurance to pay for anything is next to impossible, so were going to bite the bullet and do it ourselves.
I am still juggling school, Brady, and everything else in my life, but still managing to keep my 4.0 :) Brady hates when I study and does everything in his power to distract me from it. He has managed to ruin one laptop and one of my text books so far.
He has turned into quite the little monkey, his climbing skills continue to become better as time goes by. He loves to stand up in the center of the coffee tables, climb over the couch, use toys to stand on and climb over things. He keeps us on our toes and busy all the time, but were so happy to have him back.
Anyway, thats about it for now. I'm going to take a few minutes and enjoy my quiet time. Hope everyone has a great, safe, night.
One last note: please say a prayer for our little Angels that are going through seizures issues and sickness at the moment. There have been several who are currently in status, one of which they are considering putting into a coma as they did Brady. We pray that the meds work and that they do not have to go through such a terrible ordeal.
Will post more later!

posted by angelwings @ 12:05 AM
   0 comments
Sunday, January 10, 2010
Well just thought I would post an update on how things are progressing here.
Brady is doing well, totally back to his bad little self. He has been doing some sign language lately, eating like a little pig, and adjusting to his new meds very well. I cant seem to keep up with him these days, he is a little wild man. He went back to school last week and did seem to do well, but was very tired by the end of the day. Were thinking that we might have to cut his hours back a little. We know that when he does not get his nap out, he is more prone to seizures, so all day might be to much for him. I always say that if Brady is sleeping, its because he needs the rest; waking him up doesn't seem like a smart move.
I am still juggling family life and school, so things remain chaotic around our house. Brady does not like when I am doing my school work on the computer and continuously slams my laptop shut, the little stinker!
Brady is very jealous of mine and his dads time together these days. He thinks its funny to place our hands together and then snatch them apart. He does not want his dad and me to sit next to each other, he always wiggles his way in between.
He is back to his old destructive little tricks, which means "he is back". He threw my new suede boot in his bath water this week, and just tonight poured a full can of pediasure into my laptop; I'm typing on a new one now.
Christmas was good, but Santa stayed way to long,lol. Brady and Peyton got so many new toys, and of course Brady chooses to drag all of them out to the couch and the middle of the room. It was a special Christmas though, we had so much to be thankful for this year. At one point when Brady was in the hospital, we were not sure that he would make it home, let alone for Christmas; thank God for miracles! Brady came home, as well as did his new little cuz, who was born premature.
Anyway, not much happening here. Just thought I would post an update while Brady sleeps and in between schoolwork. Will post more later.

posted by angelwings @ 2:33 AM
   0 comments
Sunday, January 03, 2010
Well we had a fabulous New Year's Day and night!! Some of our friends from Florida, who have an Angelman child, came to stay the night with us. We all had a blast while they were here, and were sad to see them go. We went out for supper New Year's day, but had to settle on Pizza, as everything else was closed for the day, but we had a great time anyway. We came home,played on the Wii and just hung out together, while the kids played. Were looking forward to having them over again, and hopefully they can stay longer the next time :)
Anyways, Brady is doing great! He has been using signs lately. We've been going over the signs with him, and he has been picking up on them pretty quickly. So far his favorite sign is "hungry", go figure,lol.
If nothing changes, he will get to start back to school next week. I know that he is missing his friends and teachers; I think it will be good for him. He is handling his meds very well, to our surprise. We go back to the doc Jan 19th, not sure if they will do an EEG, but were a little nervous, after last time. I will keep you all posted.
Last but not least, please keep our Angels in your thoughts and prayers. We have many kiddos suffering from seizures these days. Sean, one of our babies, is in the hospital atm. He has been suffering from multiple seizures lately and has been admitted for a 24hr EEG. Please pray that the docs can get a handle on these seizures and that this family can bring their baby boy home very soon.

posted by angelwings @ 1:22 AM
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About Brady

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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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