Yesturday was our 3 month clinical check up with Dr. Swaboda. Riley did very well. They are very impressed with how he looks and how he's growing. His chest is a little small so they are going to up his pressures on his bipap to help expand his chest some more. His electrode maping test was the biggest miracle. It's these little electric shocks that test how many branches the nerves have. When the nerves die off the ones that are still there branch out and fill the empty spaces. The goal is to have as much branching as possible and to maintain the branching. This is what the medicine is suppose to do. Whether it does it or not no one really knows. His branching results were quite impressive and they said that he's one of their stronger type one kids. We talked about his movement and his ability to get around. Dr. Swaboda would really like to see him in a power chair. She feels that he has enough control and movement that he will beable to control the gears and he would be much happier being able to move around. This was good timing becuase our wheelchair eval is tomorrow. We have two options a power chair or this specialized stroller. I'm torn between the two. A chair would be awesome for Riley to move around in, but it's very big and not very portable with the vehicles we have. The stroller would be more portable and easier for us to use, but it would confine Riley. I'm going to see if medicaid will pay for one and have our insurance pay for the other. That would be a dream come true
You may remember a post I had a few months back about how the hospital took away peanut butter in the unit kitchens. Well the recession is hitting even harder now because we no longer have to go boxes in the cafeteria and they replaced the Styrofoam cups for these mini ones. So instead of grabbing one drink of diet coke I now have to have 2! And instead of putting my dinner in one box I can now have a plate with tin foil over it. It seems that in trying to save money they have created more thing to throw away! Who is in charge? This is getting a little ridiculous!