The Journey We Are On.....

We just made it back from the eye doctors at the University of Iowa. Dr. Wilkinson is a low vision specialist and Dr. Stone is a retina specialist -- who was actually on the phone with a billionaire donor today who has gotten a fellow billionaire to also donate money towards retina gene therapy, that hopefully one day will help children with peroxisomal disorders and many other rare diseases. It was our first visit with them in over 3 years, but now that we live closer and it i s a 2 and 1/2 hour drive versus a 4 and 1/2 hour drive we'll be going back on a yearly basis. Both doctors were very happy with how well Ethan is using what vision he has and his overall development (the last time they saw Ethan he wasn't even a year old yet). It is so nice to see doctors who know about PBD-ZSD and who really focus not on a number in regards to what Ethan's acuity is, but rather what Ethan is doing with the vision he has. BEST NEWS --- Ethan's far-sightedness is no longer ...

Today, was Ethan's first day of physical therapy in the pool. He had a blast. Ms. Erica, his PT at Easter Seals, was impressed by how well he "swam." They worked on kicking his legs, moving his arms, standing in the shallow end, and going from sit to stand on the steps. He was completely exhausted by the end of nearly an hour workout in the pool. Here's some pictures of Ethan waiting to get in the pool. He was looking around, taking everything in. I don't know how much he understood when I told him he was going to get to go swimming but he seemed to understand that something exciting was about to happen.