29 July 2022

The biggest news is that, working together, the physical therapist (by pushing on his belly) and speech therapist (by showing him how to breathe and open his mouth) got Nathaniel to vocalize! He was quite pleased with himself, and all evening long he made sure to laugh with noise when he smiled.

Every day when Nathaniel goes to therapy, he changes to a new wheelchair. This new wheelchair is less restrictive, and he has to have more control to sit upright. We tried using it about a year ago without success. Now that he is stronger, I think he actually prefers it. He can move this wheelchair around by himself using his leg and arm. We are working on strengthening his muscles. He can move forward and backward, and even turns right and left to get where he wants to go (within a few meters). He needs to get stronger to be able to move more when he is outside because pavement is not as smooth as indoor tiles. Still, he seems motivated to work on it.

He is eating nicely, but obviously not enough because he keeps losing weight. Unfortunately, we have gone back to supplementing. When he gets to his previous weight, we will stop supplementing. He still cannot drink enough liquid, so he gets that via his PEG. He enjoys cooking, so maybe if he makes his own food it will encourage him to eat more.

In vision therapy, he is learning to focus more and follow moving objects. During one therapy activity, there were three objects moving around on the computer screen and he had to continuously follow only one object with his finger. He did really well. He was able to focus on one object and not get distracted. Another activity is to wait until a moving circle moves into an outline. He has to follow the movement and wait until it gets to the right place. Then he has to push a button. It takes a lot of concentration, memory, dexterity, and of course understanding visual input.