Tuesday, March 30, 2010
Friday, March 26, 2010
Monday, March 22, 2010
UGGG there was a video with this that I've been trying to upload for 3 days. Sorry, atleast you can enjoy the pics!
He is moving on to the next level class which starts next week.
What a great kid!
Thursday, March 18, 2010
After the Lokomat we went next door to see our Augmentative Communication specialist and Gabe, the rep. for the ECO 2 eye gaze computer. Annie was very exhausted (45 minutes on the treadmill coupled with a sleepless night and very little breakfast will do that!). I was a little disheartened when Annie first got on the computer because she was so tired and so upset that I thought the day would be a waste and we would have to set up a new day and time to come back out and try the ECO. Fortunately that was not the case. After a few minutes of little response we ended up turning on some music and allowing Annie to control it on the computer:
Yes, the music is a little bit, ummm....... exotic. But Annie sure seemed to like it! You can see in the beginning of the video how she said "eat" (which was so appropriate because she barely ate breakfast!). Then when asked if she wants more music she said "more" twice!
After a little more time playing around on the computer Annie told us that she wanted to eat again, she read a story and played more music. Then she told us "I feel bad", "stop, stop". Ok, I know this sounds weird but I was soooo happy to hear that! I obviously didn't want her to feel bad but I was happy because she spontaneously communicated with me, just a feeling, just her thoughts, not a command or a request just telling us how she feels! WOW, I'm almost in tears just thinking about it!
After a few more minutes of talking Annie told us "I want go". What an amazing day!
The ECO2 is by a company called PRC and they use the MyTobii eye gaze component. This was the 3rd company that we have tried an eye gaze computer through. The difference between the ECO and the other computers that we tried is that the ECO uses the Unity Language program and makes spontaneous communication very easy. We have been looking at the ECO for a very long time. All of their symbols are available as a free download on their site so we have been slowly printing and changing Annie's pictures to the Unity symbols. Needless to say today was the clincher and we have asked our Aug comm specialist and the rep to get the ball rolling in getting the paperwork started to appeal our insurance company. We first started looking at eye gaze computers over a year ago, it was a slow process but now we are certain we are getting the right device.
I am so proud of my Annie!! I believe in her strength and abilities, I believe in her intellect, I believe that rett syndrome will be cured, I believe that cure is coming very soon, I believe Annie will talk and walk, I believe that our Lord heals. And today I caught a glimpse.
Tuesday, March 16, 2010
"I am fearfully and wonderfully made!" psalm 139:14
Monday, March 15, 2010
Wednesday, March 10, 2010
If you are a Rett Syndrome family and want to join in the FUN and register your own team, check out our Dress Up 2 Cure site to learn more and sign up today! (In case you need more incentive...there will be some amazing prizes this year for participants and top fund raisers...YAY!!!!)
Monday, March 8, 2010
Monday, March 1, 2010
In addition I just have to add that recently a show called "the Family Guy" has made fun of and mocked someone with down syndrome. I have never actually watched this show, I've seen commercials and find it rediculously offensive but with the recent show that they have aired they've no doubt crossed the line. I hope that anyone who has previously been a viewer will see their hateful nature and boycott the show. There is NO place for a TV show to put down an entire class of people that are unable to fight back.