I received this e-mail from Steve this morning!! I just copied and paste :)
Yesterday was another busy day at the hospital. When we got there we found out that Carson got a new room! This is great because in his old room he was right by a door and was in the middle of a main traffic way for people going from room to room. He’s now in a smaller room with 5 beds and his is right next to the window. And all the other beds have little baby girls in them (I told Carson hands off). They are a little nosier than he is; granted he can’t make noise with his intubation.
We were able to meet with the geneticist today and discuss Carson’s Apert’s Syndrome. She answered a lot of our questions that we had. She said that given Carson’s condition, he should be expected to live a normal length life. She told us that there was a probability that as he grows up that more bones in his body will fuse, mainly those in his hands, feet, skull, and neck. It will be something that we will have to wait and see. She said that he will be short compared to other kids his age. She said that answers to other developmental issues like cognitive ability and ability to use fingers would come with time.
We are still waiting to meet with the ENT specialist to discuss why they cannot do surgery on Carson’s Nasal airway. We are hesitant to just go with a tracheotomy since it would likely further delay his development. They have been a little resistant in wanting to meet with us in person. Please pray that they will just meet with us so we can make a decision and move on.
Carson had his hands and feet X-rayed to see if the bones are fused together. We will be meeting with the plastic surgeons once they get the results back to determine how to proceed. We also heard that we will be meeting with the cranial facial team to access Carson’s skull. There are many surgeries that he will likely need to correct his skull shape and correctly set the bones in his face. Our poor little guy is going to have a lot of surgeries to go through in the future.
Jorrey is coming down from Montana today and should be here at 3:00. We are so excited to have her come. She will be a big help for Heather so she can go and visit Carson in the hospital. Heather’s mom leaves this Friday, but my mom (Steve’s mom) is coming next week Monday to help out with driving Heather to the hospital while she is healing from her C-section. We feel very blessed to see how God is organizing all of this help for us.