Thanks for all the feedback on our website. This will be good for me to be able to focus on something. I know John has not been diagnosed with Mito, and I still have hope that he won't. I first read about Mito when we began the discussion about the G-tube. When I first read about it, it gave me chills. We still had so many things we had to rule out, and Mito was always the last thing on the list. After the last round of tests including the muscle biopsy this is the only thing left. I have learned that there are so many families that have become active in the Mito world that does not have a diagnosis. Part of the problem is that science has not found a way to either diagnose or rule out a diagnosis. Since this is the only thing left on our list, I feel like I can grasp the possibility of a mito diagnosis, and spend some energy on this cause. So even if we do not have Mito, I am still helping a good cause just by spreading the word.
John is feeling great today. We just went for a walk. He has a little walker that he loves to push around. He wants to walk so bad. When he is walking with his walker he is so happy he must feel so independent.
I did learn yesterday that Mito and vaccinations have nothing to do with each other. So we will continue to vaccinate. We have this wonderful new Pediatrician that I email almost everyday with something that I read about and am worried about. She has so much energy, and is educating herself on Mito. Thank you Kristi, for all you help!