Today was another really long day. We were at the hospital for about 3.5 hours this morning. We had a really good appt with the neurologist. He was very intrigued by Alex. He feels like quite a bit of Alex's symptoms could be explained by a mitochondrial disorder. He spent an hour and a half talking to me and then a short examination of Alex. He decided to run more bloodwork, do a urine test, and and do an EKG. We also need to have a more thorough cardiology exam when we get home. He wants us to come back to do the muscle biopsy. In Cincinnati they only have the ability to take the biopsy and freeze it then send it for analysis. In Cleveland, they can do tests on a fresh biopsy. It is more accurate and they can do quite a bit more testing. So he is going to call up to Cleveland to see about getting us scheduled for a biopsy up there. In the meantime, he is curious to see what Alex's blood/urine looks like. Overall, a productive visit, but not the answers we would love to have!
We will leave first thing tomorrow morning and drive back to NC with Dad. Flights are booked through Monday. We will probably fly home Wednesday or Thursday. Alex and I need a few days of down time. It is really hard emotionally and physically on our trips out here. Please pray for our safe travel home.
I will keep you updated as I know more.