Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Thursday, March 18, 2010

I Believe

Annie wore her "I Believe" shirt today which ended up being very appropriate. We headed to Novi again this morning to do the Lokomat. Of course Annie did awesome and loved every minute of it!

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:

video

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!

video

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.

3 comments:

  1. Wow! It was so awesome to see the video, thank you for sharing. ANd thank you for your words, what a beautiful way to start a day. I can't wait for Annie and Claire to be managing all sorts of things with the voices from their computers.

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  2. That is truly inspiring. I can't wait for Juliana to get to that point. Your videos just renewed my faith that someday soon my little angel will be able to communicate everything she thinks and feels.

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