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.
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