Update 3/23/07

Jack is sick with a cold once again. His sleeping for whatever of the many reasons has been poor. His spirit as always is high!

We went last week for the swallow study. At least that is what it was suppose to be. They ended up only evaluating him. He didn't even see a doctor. They watched him eat and then the therapist went and talked with the doctor. Then she came back and said when he is having a really bad day because it was a average day, call and they would fit him in and do the actual study. What a waist of time! Yes it is so easy to call and just get fitted in. I do work ,from home or not I work. My husband has to sleep once in a while, but whatever. Bottom line he appeared OK so they were busy and were not going to take the time to do the actual study.

We went to the pulmonary doctor yesterday and that was a much better visit. He couldn't believe they didn't do the swallow study. He said who cares if they actually saw him choking or aspirating, during the test there is so much they could see. Anyway he saw enough on his own. He said Jacks throat is burned. Not red due to a cold, not a strep looking throat, but burned. The doctor was probably in his early 60's and said it is a burned throat very different from the other types. He cant believe none of these other physicians haven't picked up on it. He suspect a severe case of reflux since birth. It is different then a adult in that the symptoms can be very different. It can cause choking, gaging, upset stomach, sleeping problems, prolonged sickness leading to pneumonia and bronchitis. This could be due to the stomach muscles not working correctly due to the mitochondrial disease. It can also be hereditary and Jacks brother is having issues and his father has massive esophageal reflux. Jacks father was told his type can lead to esophagus cancer.

The pulmonary doctor is starting Jack on meds for reflux. He is referring him for testing to a pediatric gastro doctor. We will go back to see him in 2 months and see more about the respiratory problems and asthma. He wants to see if any of the issues clear up or get better once the reflux is treated. He does think he has asthma but due to the reflux, he isn't sure of the degree. So I can use his nebulizer as needed.

Jack is having a good attitude. It is ours that gets negative at times. I feel bad he has to go through these things. Just keep praying for him and his upcoming surgery in April. Thanks to all of you that keep our family in your prayers.