Jack's appointment and referral update

Well we went on Friday to see the specialist here in Syracuse. It was a very good appointment and I actually got somewhere. The specialist ( he is amazing) personally got on the phone with the place for the swallow study and talked to someone there. He told them he needed to have Jack seen ASAP and told them of his condition. They already had records from his pediatrician, but with out the specialist records were not aware of the complete history. So we should have a appointment this week coming up. He also is referring us to a pulmonary doctor at the end of the month following the swallow study. Due to Jack's respiratory problems and asthma I requested this. He agreed with the idea and said the choking (if he is aspirating) could cause some of the respiratory problems. So the two appointments are related. We will see him after the muscle biopsy to discuss more treatments. He will discuss the medications with the specialist from Cleveland after the biopsy. After that Jack will just be maintained by the two specialist and we will deal with problems if and when they arise. He will continue his therapies and medication treatments are all at this time. The specialist would still like that Mitochondrial DNA screen done. I appealed the fact that the insurance will not pay and I am waiting to hear back. Worse case I guess we try to save up the money to get it done. Other then that, I guess that is all we can do.

When I got home from the appointment I had a message from the nurse from Cleveland. Jack's Muscle biopsy is April, 19th at 7am. We have to go in the morning of the 18th for preoperation testing. So we will leave for Cleveland on April 17th around noon. If all goes well we will travel home on the 19th. I talked with a mother of a child who had a muscle biopsy done. She said her daughter was so drugged she slept the hole way home. It was the next day that she was in a lot of pain. They cant walk for a few days either. She did say by day four you would have never known she had it done , so they bounce back fast.

Jack today still has a cold. He is getting better. He has had diarrhea lately, but other then that he is ok. Please pray we get a answer from the muscle biopsy. There is a 10% chance we could put him through all this for nothing. It is the best chance and testing that we have to find out information. If we could find out the exact type of Mitochondrial disease from the Muscle biopsy that would be awesome! Please pray we get some answers and Jack does well.

It is very frustrating to see how other medical professionals see Jack. On a good day if you didn't know Jack was sick you would never guess that he is. On a bad day you might think he had a muscle disease or CP. His physical therapist (who I love) can test him or give him a request on a good day and he can do it know problem. She can on a bad day give the same request and he not be able to do the request at all. It is very frustrating but common according to the specialist from Cleveland. It is hard to see him have bad tremors, or see him falling all over. The crying in pain at night, the coughing and wheezing. I must say through it all his spirit is high. He is so amazing! He inspires me even at 2 am when I think I cant take anymore. He has the joy of the Lord! He presses on and he fights. Nothing will keep him down!