I don’t know…I just don’t know.
There are no real answers. I know, shocking.
We spent quite a bit of time with Dr P this afternoon going over Jack’s mitochondrial test results. While he tested negative for the really bad kind, his blood levels indicate that he could possibly have one of the more rare breeds of mitochondrial disease.
Dr P presented us with three choices:
1. Do nothing. After all, Jack will only be 3 in September and we could give him a little bit of time to grow.
2. Send him to Atlanta or Augusta for a muscle biopsy, because this is the only for-sure way to diagnose mitochondrial disease (which is why he wants him to grow, so we can eventually do this….)
3. Send him to the Mitochondrial Guru in Atlanta who would do his own testing, and keep Dr P out of it.
After some discussion, we’ve come to the conclusion that we’re giving Jack a much needed respite from testing for 6 months. His medications have been adjusted to hopefully provide him (and us) some much needed sleep, and we go back in the beginning of the year.
I am not happy.
While we feel that we are closer to an actual diagnosis, there’s a part of me that just wants to pull the covers over my head and pretend none of this is true. Dr P feels that Jack’s tremors will not ever be relieved by medication, and we should perhaps pursue the adaptive technology that Big G wants to get him (this is in the form of computers and touch screens–as he won’t really be able to write when he can’t keep his arms still). He also feels that Jack will be able to get lots of help when it comes to school…
especially since it’s looking more and more like the feeding tube is going to be a permanent fixture in our lives…which breaks my heart into a thousand pieces. My feelings are all messed up right now, so I will end at that today. When I get a better grasp on things, I’ll be back. You can’t get rid of me that easily!