This all started with the letter H. Tonight it came full circle. If you recall we took Haddie out to Oklahoma to try out an Eye Gaze machine designed for ALS patients. We didn’t know much about eye gaze then. A good Christian man named Steve designed it through Oklahoma Christians Engeneering Department. He said he’d be interested in making a kids version down the road and asked us to fly out and try it out.
So we did. And I wasn’t so sure how well it would go when I saw that keyboard. Definitely not a kids version. But I asked Haddie, “can you spell your name, can you find the H”. It took a couple seconds but that little bubble on the screen moved over to the H...and I knew Haddie knew more than I thought she knew. She could spell.
We came home and found out that the school actually had an Eye Gaze program called PRC. It was a different machine that was designed for kids. Music, games, activities. It certainly was something we were interested in. We love Steve and how he got us started but we know it will take some time to make that kids version. So we got Haddie a trial with PRC during school. Unfortunately Haddie was sick and in the hospital most of the trial. She showed some promise but just didn’t get to use it much.
We got the trial extended this summer and got to keep the machine at home. She did well some days on it. She proved that she can use it and ask for certain things. She didn’t do that all the time. Probably because she’s 5. I don’t know a 5 year old that will do what you ask them to on command every time. However in order for us to get the machine we would need to have her therapist write the report that she could actually use it. Otherwise insurance won’t cover it and we’d have to foot the $15,000 bill.
We believe the therapist can write the report. We need to make a trip to an eye center in Cincinnati to have them take a look. We can take a quick peak a couple other machines and make sure the one she’s using is best.
All that to tel you this. Tomorrow they have to take back the eye gaze machine. Trials over. Haddie was about half asleep and not doing much on the machine tonight. She was tired from a swim party. I took it to the keyboard I created on it that just has plain letters. I leaned in and said “Haddie, I want you to find the H. There’s 26 letters up there. I want you to show me that you can do this again. Where”a the H?”. 5 seconds later............ “H”. She did it. Kate and I may have shed a tear or two. ..... “H”. She did it again. “Okay Haddie you smart aleck.”
I’m not sure why I’d doubt her. I know she can do it. But sometimes I think I’m dreaming. This non verbal girl is becoming verbal. It’s gonna take time and practice. But it will happen. Even if we have to get $15,000, it’s gonna happen. Every night we ask a God to let Haddie walk, talk, laugh, and smile. Gods allowed her to do those things... in reverse order. She’s smiled. Not long ago it looked like she was even laughing while driving her pink car. And now, she’ll learn to talk. God is amazing.
She’s enjoying her new sister Selah and has a huge fan in Ansley. If you didn’t see the video of Ansley cheering her on last week you should check that out below.
As always thanks for the prayers and thinking of Haddie. She continues to show me the power and love of God. H.
Ansley Cheering On Haddie's Eye Gaze
Ansley Cheering On Haddie's Eye Gaze
