His Eyes Say it All - End of the Trial!

Well….We are at the end of the 5 month trial with the Tobii Eye-Gaze system to help Raymond with communication.  Today he has his last two appointments, one with his amazing speech therapist, who without her, none of this would have been possible.  The other assessment appointment is connected to the ‘decision maker’, I guess you could say.  This has been the most trying experience.  I mentioned the “ups and downs” in my last post…and it really applies to this whole experience in our attempts to help Raymond communicate.  I am going to keep this post quick….as it is also Ray’s last day of summer school and I promised to bring some goodies to the last day party.  I do want to share some video progress that Raymond has made. 

In the very beginning, we were told that we needed to show that Raymond could use this device with 75% accuracy.  Some days are good and some days are rough.  On some days Ray will start out in therapy really well, doing 50-70% accuracy for the first activity, then fatigue will hit and his accuracy will drop to 20-40%.  He has to overcome all the complexities of his conditions also, like nystagmus and poor head control.  Even for a typical person, try using your eyes to move the mouse around on the computer screen….it is not easy. 

So here are some examples of what Ray has been able to do the past month.  Just to explain, we judge accuracy by including a few choices that are desired and some that are “not” desired, which is why you will see on the screens a paper clip or a pen.  I am sorry about adding so many videos, four of them are under 1 minute, the last one is the latest and it is just over 2 minutes. 

Look at what Ray can do:

Ups and Downs…but what an amazing UP!

Last Friday, July 6^th was a crazy day, as always.  Raymond had gone to summer school that morning then off to Physical Therapy.  For the past year, he has shown a desire to crawl, so his amazing therapists took an old “walker”, removed some parts, took a towel and fixed it so that Raymond could lie face down in the towel in a crawling position.  One of us helps him to place his hands and move them, as he can not move his arms forward by himself.  Then one of us will be in the back guiding his feet and knees forward, he will then push with his legs to propel himself forward. Raymond has increased the distance he can move in the “crawler” from 25ft up to 120ft and it takes him about 20-30 mins with quick breaks to catch his breath.  Some days he does really well and will hold his head up as he is moving forward…and other days he is very tired and just “hangs” in the oddly fixed-up contraption.

So on Friday, as we were placing Raymond into the “crawler” he started pushing off with his legs.  As I asked…”Should I get his hands?”…the therapist told me to wait and see what he could do by himself.  OFF HE WENT!!!!!  We have learned to never underestimate Raymond‘s abilities, I should have know it was time for another surprise.  He was pushing with his legs, as he could not use his hands, they were back by his knees, but he was moving….ALL BY HIMSELF!!!  The therapist was just making sure his feet were not getting caught in the base of the self-made crawler.  I pulled out my phone to catch this on video….we were all in shock at what he was doing. I only got 45 seconds of video, darn it, I have not cleared off my phone and there was not enough storage. But if you watch the video, you can see how it started.  What I didn’t catch on video is that Raymond went the entire 120 ft by himself in 5 minutes!!!!! 

Here is the video:

What an “UP”!!! On Saturday came a “down” as Raymond had 4 seizures, each one getting a little bit longer.  It is not easy to anticipate Raymond’s days as he will take one step forward then two steps back.

Well, we were hoping we got the seizures under control again….then came Monday, summer school, an amazing hour of speech therapy (that will have to be a different blog), then off to PT.  I began to tell our other therapist the amazing events of Friday.  I was afraid he would be too tired to pull that stunt again Well…..AMAZEMENT AGAIN!!!!  Even though he was tired….off he went by himself for 90ft. Here is another short clip:

I love Phil. 4:13 “I can do all things through Christ who strengthens me.”  Thank you Lord, for giving Raymond a desire to “never-give-up” and for sharing your strength, Lord as you always roll, walk and crawl right next to him.