Update on trip

We came home from Rochester a little while ago. The trip was fine. The appointment went OK. The genetic doctor there agreed with the specialist here and in Cleveland. She doesn't think he has ehnlos/danlos 4. I guess that is not a mild form. She thinks it is the mito disease mainy. She did say she could clinically say he has # 3 of that disease. That is the milder form . There is no reason even if he has that to make it a diagnosis. The mito disease covers all that diagnosis and more. She did do the genetic testing for the # 4 just to rule it out for 100%.

Jack himself did real well. He has been very shaky and high tremors lately. He is still snotty and having his daily issues. All and all this has been an Ok week. Jack has about a two week break from DR appointments. Hopefully nothing new will pop up. We just take things day by day. We deal with everything as it happens. I am happy the GI issues seem to be calming down a bit. The muscle pain and tetany episodes are there but seem to be less this week.