In my previous post, I mentioned how my geneticist referred me to a different place for further diagnostic work-up for mitochondrial disease, but I kept it sort-of secret in case it didn’t work out. Well, that’s just what happened. 😉 I learned that Boston Children’s has an extensive metabolism program, and it sounded amazing. But….I got a phone call yesterday that the doctor (after thoroughly reviewing my records/referral) thinks it’s best that I just stick with Cincinnati and receive all my care there as he doesn’t think he would have anything new to offer..
I am just so thankful for the Lord’s guidance in opening and closing doors! Even though this door is closed, there are many more doors that can open! 🙂
All that has happened has been such a great learning experience, and it constantly reminds me to fully rely on God for wisdom.
So here’s the plan:
1. The referral/records review process in San Diego takes 4-5 weeks, and thankfully, next week will be 5 weeks! We will see what this mito specialist says..
2. Even if he is willing to see me, that still probably wouldn’t be till next year as he is booked out. So I’m researching other mito specialists that could possibly see me in the meantime.
3. Washington and Los Angeles is currently off the list. So I’ve been checking into other places across the nation. Looking on the bright side, having a complex medical case means I can travel when I wouldn’t otherwise! 🙂