Well, we seem to be doing a little better. We are smiling, and playing right now. Other than going to see the doctor we haven't done anything but watch tv today. John's lungs and everything sounded good today so no pneumonia or bronchitis! Dr. Kristi, talked to our special care pediatrician and they had a great talk. Kristi was able to get a little insight that I wish I had months ago. The pediatrician does not believe that John has mitochondrial disease! Because of all the unknowns they cannot cross it off our list, that is not what they think is going on. What they do believe is that John has an unknown chromosomal deletion. Which puts us back to not knowing what is going on with him. So what do you do with that? Therapy! Which is a big part of our decision to move to Boston. We will be as active in therapy as we can. Hopefully we can get that set up asap.
Of course, I would love for my son to not have mito, and hopefully when we see the specialists in Boston they will be able to officially cross it off of our list. It has been good for me to learn about mito, and talk to people. Whether he has it or not, it helps to have people to talk to that are going through a lot of what we are going through. So whatever it is that John has I still know we are making the right decision to move to Boston. We will miss our new doctor here. Kristi has been so helpful in so many ways, but if we really do have to wait for science to catch up with John, then we will go sit in the middle of the best medical care and wait. John will benefit from the therapies there, and with his walker I can't imagine him having to push that thing around in the snow and ice.
Let hope that John continues to feel better. His birthday is Friday, and I would love for him to feel good on his birthday.