Hadassah has been doing well since her hip surgery. She was sore for about 3 weeks and is starting to comeback from that. She's hasn't moved her legs much at all yet so we are starting to work on that again. While at PT her therapist was moving her legs and a big smile came on Haddie's face. I think she misses moving and crawling so we are praying that comes back quickly.
The big news is we are headed to Oklahoma tomorrow with Haddie. Jeff Dimick from OVU told us about 2-3 months ago about someone he knew out at Oklahoma Christian University who had developed Eye Gaze technology for ALS patients. As you may know ALS is a terrible disease that will take a fully functional person and reduce them to the point where they cannot move at all...well almost. They can still control their eyes. So technology has been developed where a patient can look at a screen and then make a choice with their eyes. This isn't brand new technology that this guy (Steve Maher) has developed. But his desire is to make it much much more affordable. His unit costs around $3000. The next closest is around $10,000 we've been told. Here's the link to the video on it...it's worth a look!
So our thought was "this works on people who've lost function, can it work on a kid who is learning how to function?"
We called him and told him about Haddie. He said that he was very interested in trying this out on kids and Haddie would be the first. We truly believe she can make choices using just her eyes. His programming would need some tweaking but he believes it is worth a shot. Yes, there is existing technology out there for kids already but once again the price is rather steep. So the plan is to go out and test the equipment on Friday. Then on Jan 16th Ewing has arranged to bring in some Eye Gaze technology that the school has and test it on her. This will give us a more well rounded idea of what might work best for Haddie.
We ask for your prayers. Mainly that we can get there without any issues. We are flying to save time and driving. We are a little nervous about Haddie's shunt and the pressure changes and also the whole carseat thing. We have a plan and think it will work but you never know how it'll all work until you do it.
Also pray that this can work for her. When we look into Haddie's eyes we see light. We see intelligence. There's a personality there. Yes, she's had a level 4 brain bleed on both sides of the brain. Yes she's had seizures. Yes she has delays. But that hasn't stopped her from doing things and developing. A delay by definition means that things will be slower...but it still can be done. It's an obstacle to move around. We believe that there is something there and that she can think. How frustrating it must be to think but not communicate. That's why we are headed to OKC.
Thanks for your thoughts and prayers.
