Waverly's Journey-1 in 100,000

Last Wednesday, we received a call that explains a little more about our girl. The doctors ran a test on my amniotic fluid (that they had from my amniocentesis) and discovered that Waverly has Miller-Dieker Syndrome. In short, MDS is a rare genetic disorder that results from a gene deletion on the 17th chromosome. This leads to Neuronal Migration Disorder and Lissencephaly ("smooth brain") in the child. There are other characteristics of children with MDS as well, including the things I mentioned before (deficits in cognitive and motor development, seizures, feeding difficulties, low muscle tone, cerebral palsy, and distinct facial characteristics). According to one source, MDS occurs in 1 out of 100,000 children. That number keeps ringing in my head. 1 in 100,000. While at this point it doesn't seem to change much about her logistically, it gives us somewhat of an explanation, and a name. I'm not sure if I like that or not. It does not, however, change how incredibly amazing she is. We are so in love with our girl, and think she is the most beautiful thing in the world! Please continue to pray for her as we learn about her and this condition, and travel this long road.