Cleveland Update

What a trip is all I can say. Jack started with stomach issues when we were getting ready to go. We did not know what to make of it since he has a lot of stomach problems anyway. We ended up having to stop 4 times on the way down. We had to clean the car one time and change all Jack's cloths. At the appointment he had to leave three times to get sick. The only good thing was that him being so ill was actually good for his blood work. The doctor ordered many tests. Jack had 13 vile of blood taken. He turned very pale and a light shade of green. He almost fainted and had to lay down. The car ride home was better. He was totally exhausted. We stopped to eat and he had nothing. He did not even want to drink anything. We felt so bad that we let him try to win a stuffed animal from a machine. Thank God he won. It made him smile. It was the highlight of the trip for him. He has not eaten at this point in all most 36 hours. I am trying to keep him hydrated. As it is if I followed doctors instruction to a tee I would take him to the hospital for IV fluids. I just don't want to put him through that unless absolutely necessary and he seems to be perking up.Please keep Jack in your prayers. We are praying for some answers and somethings to show up in all the blood work that was taken. We are also paying he is over the hump with the stomach thing and doesn't get dehydrated.

Update

We came back from Jack's Rochester appointment the other day. It was a frustrating appointment. At his last Cleveland appointment they said he has connective tissues disease. This of course is aside from his mitochondrial disease. We go to Cleveland next Wednesday to see a genetic specialist. Jacks doctor here wanted us to go see a doctor in Rochester as well. We went three years ago to see this same doctor. It was frustrating because they could only talk about what we were there for three years ago then . In many ways I felt it was a waste of my time. I pray next Wednesdays appointment in Cleveland is much better. I pray we get some true answers. It is frustrating because for years now that Jack has a confirmed diagnosis of Mitochondrial disease many doctor just use that as a answer to why he is having whatever problem. It is also frustrating because many in Syracuse have little experience with his disease. Then we go to Cleveland and they say yes he has confirmed mitochondrial disease but we believe it is secondary to something else. We also think he has connective tissues disease as well. My feeling is call it all what you want. What do we do? How can we take his pain away. What do we need to watch for? 
As far as school it has been an extremely frustrating year. I feel just because Jack appears fairly normal they down play things. Please pray for Jack and our trip next Wednesday.