I have thought of them often- wondering if the diagnosis was bad news and that's why we haven't heard from them. Thinking of you Deanna and Alex!!!

I have her on Facebook. I haven't seen any statuses on it...but then not sure how much she likes to share on there.

Thanks, Heidi.
 


The news so far is so-so. It's been frustrating trying to get answers from the doc's office. Finally on Friday, I heard from them (after I left two messages).

The nurse said that the doc was "confused" by Alex's muscle biopsy results. They did show "mild myopathic changes in the tissue" but the doc didn't know what to make as an official diagnosis.

So he has sent the results to a former colleague who has moved to Alabama. I'm HOPEFUL that we'll hear something from them this week. But who knows?
 


Otherwise, we're continuing with PT and Early Intervention as scheduled. And we're planning to keep our appointment with the Ehlers-Danlos Clinic in Cincinnati.

You're too kind to think of us. When we know something, I'll definitely post.

Always good to hear an update, Deanna. I really hope you get some definitive answers soon! Alex is in my thoughts and prayers!

It must be so scary and frustrating to have to wait this long! Good to hear from you...keep us posted. Your avatar pic is ADORABLE!!!!