A Diagnosis?

It's been two weeks since Ami's lung biopsy at St. Louis Children's. We still don't have a diagnosis. We are still waiting for two tests to come back. One is a surfactant test and the other is a genetic test for NEHI (.Neuroendocrine Hyperplasia in Infancy). If you had to choose one of these horrible lung diseases this would be the one to pick. In most cases the child out grows their need for oxygen. There is not a specific age when the children out grow the need but usually by school age.There is no medications that can be taken to help and no cure. In most cases all that is needed is oxygen with the occasional breathing treatment or dose of steroids when sick. It's been a battle the past week trying to get a hold of the doctors in St. Louis to find out what is going on. Dr. Moore has been fantastic trying to help us. She called from home last night when she finally got the email from Dr. Rivera in St. Louis. We will be going back to St. Louis on the 7th of July for a pulmonary functions test (PFT). We are planning on making a weekend out of it. Denise said we could stay at her house, we have those tickets to the ball game, and maybe the zoo. I'm hoping this will be his last hospital visit for a while. We figured it out the other day. He has spent basically a month of his little 9 month life in a hospital. Ami is now going to Physical Therapy. His first visit was yesterday. The therapist said he is about a month maybe two behind. She didn't think it would take very long for him to get caught up. She gave me some good exercises to do with him. They will help him figure out how to crawl, get into a sitting position from his knees, how to get to his knees from a sitting position, and how to roll over. We go every other week. While doing her exercises she quickly discovered how active he is. She asked me if he moved like this all of the time. My answer "yep, until he passes out." She also made the comment "you're very stubborn, aren't you." I just giggled. She figured him out pretty quick. She said that he is one of those kids who are going to what they want when they want and no matter what you do you can't change that. He gets that from his daddy. Haha. There is a light at the end of the tunnel. It may be dim but it's there and we are running towards it.