Home & Hope

Regan spent much of Wednesday on oxygen and went through another EEG. But she improved steadily throughout the day and had a great night. Tonight we have some great news...

Regan is home and our hope has been renewed. She has been breathing well w/out oxygen since 2pm yesterday. Her lungs are clear (for her). And she still hasn't had more seizures. That would be worth a party all by itself. But there's more...

There are about four places in the country we'd love to take Regan for specialized Mitochondrial care...San Diego, Seattle, Atlanta & Cleveland. In each city is a special clinic with some of the world's leading Mitochondrial experts. At the Cleveland Clinic is Dr. Bruce Cohen, who has had a major hand in leading the United Mitochondrial Disease Foundation. I have been very impressed with his leadership, patient care and writings as I've learned more about him. But he's in Cleveland...and we're in the corn...484 miles according to Google...sorry Drew Carey, but that's just too far away. We can't bridge that distance...but now we don't have to.

We have met a new doctor in Springfield. He just happens to be a pediatric neurologist who worked & studied with Dr. Cohen in Cleveland. He has extensive experience with mitochondrial issues. And he has moved from Cleveland to Springfield--we're convinced JUST FOR REGAN! For us, meeting new doctors is often like meeting the Wizard of Oz behind the curtain...they turn levers, make a lot of noise & blow smoke but don't have a clue about how to help Regan's mito issues. But Dr. AbdelSalam may just be the real thing. He's already made some significant suggestions and changes to her care. He's been able to explain some things to us that we didn't understand about the way her body works. And he has a get-it-done kind of attitude. He's all about trying new things. His grasp of her metabolism encourages us. And his optimism is refreshing.

We're not sure what's going to come of all this. But we're home & filled with hope tonight!