Monday, May 5, 2014

We are so thankful for each one of you who fasted and prayed for our family yesterday.  We felt an added strength, peace, and comfort during this difficult time in our lives.

We met with the Cardiologist once again.  I wanted and needed him to show me Mettie's heart one more time.  He showed me her CT scan, the 3-D picture of her heart and pointed out to me the important things that were missing, the holes and closed valves.  He also brought in an ultrasound and showed me Mettie's heart right then and there.  He took time to explain everything about her to me again.  We have interacted with 4 different cardiologists throughout our time at the hospital; all of them good but this one was who we needed at this time.  We needed his insight, his understanding and his sincere desire to help us.  I know there was a reason he ended up in rounds the Friday morning after our dark meeting with the Care team.

We also met with the Geneticist again.  We needed a clear understanding of how the genetic test was performed.  How accurate they were and the affirmation that Mettie's cells were tested more then once.  That this indeed was Mettie's results.  He confirmed that Mettie has a huge deletion of Chromosome 5 short arm.  Not only does she have the deletion that causes Cri-du-Chat syndrome but an even greater and more severe deletion.  Mettie has this plus all these extreme physical conditions.