Tuesday was back to school. Ian did great. Wednesday was school for Ian, I joined him as well since we had a new nurse start. Brian and Becca went to Philadelphia for the 5th grade field trip. They had a great time. Thursday was another M.D. appointment, pulmonary. It was good, Ian is stable on all of his vent settings. We continued our surgery discussion with him, as Ian getting the spinal surgery is a risk for him, much more then the normal person. At this point, Ian has told us he does not want the surgery. We told him we are just gathering all of our fact and he will help us make the decision when we get there. This is a very difficult decision for us, looking at the X-ray on Monday you could see his lung begin smushed. That along with the pictures above just breaks our hearts. It is all part of the horrible disease. Thursday night, Ian decided to have some fun with oxygen, just for a boost. Friday, was school and getting casted for the brace. This afternoon Ian decided that he wanted to have more fun, a plug which did not want to come out so easily. Tonight we are all comfortable with sats in the upper 90's getting ready to watch Cloud 9 as a family.
The ups and downs of a neuromuscular disease.