Our family took a long road trip to California where Elise had an appointment at Katie's clinic for Rett syndrome. There we met with 8 different specialists for 7 hours in one day. It was a long, but very informative day! The pediatrician there was incredible. I've never met a doctor like her. She spent an overall 2-3 hours explaining and going over things with us. She was very interested in Elise's case.
Here are some specific takeaways:
While we were there Elise trialed an eye gaze device and it was so fascinating. Researchers are finding that patients with Rett syndrome have a greater ability to understand and communicate and are more social than previously thought. Eye tracking works by having one or two cameras that are built into the eye gaze unit. The camera "sees" the reflection of the light off the pupils and then an algorithm turns the information from the camera into "mouse" movement. While there Elise was selecting videos she wanted to watch and foods she wanted to eat then commented how well she liked them. She told us Diego was boring :)
This is actually the most frustrating part of the whole thing. So now we will have to fight with Medicaid to try to get the device (which isn't likely since we just barely got a device) and if we don't get it, then we would have to wait 5 years.
So when it comes to communication it feels like we hiked up this huge mountain for the last few years, got near the top, then realized it was the wrong mountain. So now we are at the base of a new one, wondering how we get to the top. So time to put one small step in front of another.
So back to the big picture: our main focus is to see if we can get her that device somehow, journal and document everything, and just try to keep helping her unlock herself. Then we go back in a year. We may got to Primary Children's if she is put into that group.
We are thankful for so many resources and relieved with the hope that she will hopefully not physically regress any further. We are also so grateful she doesn't have any medical issues which seem so prevelant in these girls. We're happy to be moving forward!
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!