We are safely ensconced in a hotel in Ohio about 2.5 hours from Cincinnati. It is dark, snowing heavily, and I am tired. So it was in our best interest to stop tonight and continue driving tomorrow late morning. Our appointment is scheduled for 245, so we have plenty of time.
As for Caroline...we saw Dr. Graham last week to discuss the results of her tests. Basically, her abdominal pain and other symptoms are from the same issue as William's. The food sits in her stomach rather than going into the intestines, so her stomach churns out acid the whole time. The intestines don't move things along, so that creates more pain and increases the risk of an obstruction. She is now on three different meds to manage the pain and lesson the symptoms. They won't cure or solve the problem, but the medications will alleviate her discomfort and hopefully help the GI tract to function more normally which in turn will help her to grow and develop.
So the burning question is, "What does this mean?" and the answer is, "I don't know." Is this the same diagnosis/issue that Will has? Yes. Does that mean she has mito? This is where the water gets murky. William's Chiari three years ago and the resulting brain stem compression have contributed to his physical issues. Which came first, the chicken or the egg? The fact that her joints are so unstable means she has the same Ehlers-Danlos as Will. The likelihood that she has mito is very strong. But until Dr. T sees her and makes a decision, we are still in a holding pattern...If she does, then starting her on the cocktail would be important. But it takes time to get through all of the little checkboxes that we have to conquer. So while the waiting time is challenging, we have at least one more piece to the puzzle.
Back to William...We are scheduled to see the orthopedic tomorrow. William still has his impressive neck brace on because the fusion was still incomplete. We have not had an xray on the cervical spine for two months, so anything could have happened. Best case scenario is that the fusion is complete and the brace can be removed. The worst care scenario is that the fusion is not happening and we are having to physically do something to make it fuse which translates to yet another surgery and the possibility of a halo.
So, tomorrow morning, we will head toward Cincinnati and will revisit the esteemed Dr. Crawford.