Two Steps Forward, One Step Back

A lot has happened in the last week. I'll try to condense the events into a short update. As you can surmise from the title of this post, we have had more good news and bad news. It seems like every time we make a little bit of positive progress, we get some bad news that sets us back.

First the good news: We have a consultation with Duke scheduled for October 11th & 12th! We will be meeting with a perinatologist, a pediatric neurosurgeon, and Dr. Joanne Kurtzberg (the doctor who does cord blood transfusions). Everyone at Duke has been so wonderful and helpful. I am thrilled to be working with them!

Now for the bad news: We received an email on Friday night from the Professor of Neurology & Pediatrics at Stanford University who previously reviewed our MRI images to give an opinion on Holoprosencephaly. (His opinion = The MRI did "NOT" show Holoprosencephaly). In the email, he said that he reviewed our images with a neuroradiologist, and while he and the neuroradiologist remain convinced that Claire does not have Holoprosencephaly, they saw "significant abnormalities" including: a small vermis, an enlarged retrocerebellar space, a smooth gyri (possibly caused by pressure from so much fluid on the brain) and a possible "unusal" layering pattern of the cortical mantle, which actually may not be abnormal depending upon the gestational age. That was all he wrote. No explanation of what any of these observations meant or what these parts of the brain even do. So now we are left to wonder.

I truly feel like I have reached my limit. I don't know how much more bad news I can take. The worst part seems to be the uncertainty. We have had so many doctors spit out terms, then fail to explain what they mean or how they may affect Claire.

That said, I feel grateful for all of the love, encouragement, and kindness that everyone has shown. I don't know where we would be without the messages, meals, and phone calls that we have received from our friends (old and new). I appreciate all those people who have expressed genuine concern and everyone who has offered advice, support and prayers. I feel like my faith is being tested every day. Please keep your prayers coming.