I was contacted today by a med student who found my blog while researching CCMS. She is doing a presentation on it because one of the babies at her hospital was just diagnosed!!!!! Welcome, #8!!!!
I think I might have whooped when I first read her email at the idea that there is "another one" out there! She was writing to ask if I had any resources or contacts, so I sent her a bunch of links and the contact information of a few different people that are somehow connected to CCMS. Not specialists, but at least knowledgeable.
Guys, this is exactly why I blog about our journey. I love when our story reaches others and am amazed that God has now used the blog to support medical professionals dealing with a diagnosis. Thank you, Lord, for using our journey for good! Please pray that the medical professionals hearing the presentation will become more knowledgeable about CCMS and will be encouraged by our story. Even more, pray that they will realize that there is still hope with a grim diagnosis!