Cleveland Update

Jack had an appointment last week in Cleveland. We made a mini vacation of it since it was spring break from school for the boys. It was nice to do that with them. It is hard for Jack, and something he doesn't look forward to when we drive down for the appointment and come back all in the same day.
The appointment itself went ok. His specialist there is concerned about the tremendous (the word he used in his report) weight and height gain Jack has had.
He agrees with the specialist Jack see's in Syracuse that something seems to
not make much sense. Jack is the height of a almost 8 year old and the weight of a 10 year old. He is going to just be turning six at the end of May. Makes even less sense with a child with mito disease. He was failure to strive and low height and weight until age 4. That is more common and typical of a child with mito disease. So the doctor in Cleveland is ordering a MRI with contrast. He wants to check Jacks pituitary in the brain. He said this weight/height thing is probably either a hormonal condition or a dietary calorie issue. That is less likely since we watch Jacks sugar, log his food each day, and keep track of calories.
He also is referring us to Pain management specialist. He thought due to Jack increase in pain this would be good. He will likely through out his whole life have to deal with pain issues. He said going to a pain management specialist now and getting that in place may be good. He also would like to see him do pool therapy. Not due to exercise but due to his extreme low tone. It will build muscle and endurance. Jack will likely always have issues there and regular exercise and training causes pain and overheating. He thinks water things would be the best route. Now to find a
program for Jack. He doesn't want him in swim lessons. He wants him in a swim program. I have no clue if there is something like that around here.
The Dr also sent his muscle out for more testing. They have discovered new tests since our last appointment. They froze Jacks muscle years ago when he had his first muscle biopsy. They keep it and test it as new tests become available. Jack also had a lot of blood work done that day. He checked all the regular stuff they check with Jack and added some new blood tests as well.
They also added some more medications to the daily ones he currently takes. Hoping this will help with the tetany and muscle cramping and pain that Jack deals with. Jacks been experience high bouts of tetany and pain. The worse we have ever dealt with in frequency.

We see the specialist here in June. We have to get the medication, MRI, and pool thing rolling between now and then.

As far as the trip Jack had a nice time. It is so nice to see him enjoy himself. He has struggled greatly the last 6 months with pain. He has dealt with a lot at school. Being picked on and noticing he is different has been hard for him.
It was nice to see him just relax and unwind. He is such a inspiration to me. I am so proud to be his mother.