Michael has been doing well lately. His pfts are 49 which is actually great for him and he has been putting on weight BUT it is time for transplant and we are talking with the doctors about where. My first choice was somewhere in North Carolina because I have family there and feel I would have help and support. We looked into Duke but they don't do transplants on anyone under 14 years of age. Still waiting to hear back from UNC Chapel Hill and might possibly be contacting Children's Hospital of Pittsburgh. I am not sure of the timeline but I will keep everyone updated.
On a positive note, we are expecting!! We have a healthy baby boy who is due on July 19th. We already had all the testing done. He is a carrier but will NOT have cf. That is the first time I have gotten that call that one of my babies will not have cf and I can't even begin to describe the feeling. I sat on the porch steps and just wept with joy. We had planned on being done after Matthew but things changed for us with Michael's prognosis. There is no guarantee with cf and though we already have two boys, we aren't sure that they will be able to carry on the name. This is our chance to have a child who may survive us. So that is the update for now.