Today we had two different vision specialists come to the house. Lately Willy and I have been very worried about Reese not being able to identify where stairs are at and just not walk off them. We have a very big challenge in trying to get Reese to look at the ground while she is walking. She is very good at cruising around the house, but never looks at the ground to make sure it is clear, because she is so used to her path always being clear.
It was nice to talk to these specialist and run my ideas past them. So here is what we are going to try!! Next time you come to our house you will see yellow duct tape lining the stairs outside our house- hopefully as we work with Reese she will learn that by seeing this bright colored tape she will realize something is different and pay attention to what it is. The next thing I am going to try is to set up an obstacle course in our house. We are going to make little steps with foam over them for her to crawl up and down, and make some tunnels for her to crawl through and things to step over. Hopefully these things will work!! If anyone has any suggestions I would love to hear them.
We also talked today about starting Reese with her little white walking cane to help her navigate stairs and other objects in her path. I have had a hard time with this today. I don't know how to explain what I feel, I am excited for her to learn how to use a cane this early in life, but I think just the older she is getting the more reality is starting to set in.
I feel totally overwhelmed today with everything I need to try and teach her. I know that one day they will have a cure for Leber's and I hope it is in Reese's lifetime!! Until then I will keep myself busy making obstacle courses and duct taping stairs!!! I will also keep the advice in my head my Dad has given all of us girls ever since we were little "Keep your chin up sis"!!!
