Well, today got off to a rocky start... Isabelle got sick with a stomach bug on the way to Charleston! We actually made it to Ana's neurologist appointment on time, even with the stops. She has a fever, but is feeling a bit better. The neurologist appointment went great! Dr. K is a wonderful physician with a huge heart. We discussed Ana's pain issues at length and the Lyrica dose was increased. He also wants another EEG for the suspected seizures, which we will schedule when we get back from Cincinnati. I will follow-up with him by phone in a week. He wants to talk with Dr. S in Atlanta and do some of his on research about nueropathy in mito kids. He is also going to talk with Dr. S about Sage and further testing on her. We left Charleston at 2:30PM and made two stops in Beaufort before getting home at 5:30PM. We were home for about 30 minutes before disaster struck... Ana fell out with stomach pain and retching! She has the same virus as Isabelle! Currently she is being vented and we will try pedialyte in a couple of hours. Please add this to your nightly prayer list! I will update if anything changes.
Ana has Oxidative Phosphorylation Complex I Defect. Ana's defect is a primary Mitochondrial Disease. Ana's only chance for a cure is through God. Please consider praying for Ana on a daily basis.
Praying for Ana and Sage now before we go out for breakfast.
ReplyDelete<><