Dr Fearon called!!

Mom and I took all 3 boys to Indiana for a week to visit family. It will be a nice distraction. We left James at home, with some beer, the remote, and plans to play golf. I told him to enjoy his sleep! Ha!


On the drive up today the boys did great! We made the 835 mile drive in just about 14.5 hours, and only had to stop every 4 hours! When we were about 3 miles from our hotel, my phone range and it was Dr Fearon! I was so excited to hear from him because I was expecting a return email, not a call. The babies were so ready to get out and starting to fuss, so mom pulled over so I could get out and talk to him on the side of the road. It was so windy that I had a hard time hearing him, but he was so patient with me and we talked for about 15 minutes. He was wonderful and we are going to have a conference call next week so James can be on the line as well.

He says based on what I emailed him, he does believe it is Lambdoid, however won't be sure until he receives the CT scan. I believe we are going to cancel our appt at the Mayo Clinic and go to Dallas in the next several weeks. Dr Fearon seems to have the most experience with this. He said he believe he has done the most surgeries in the US with Craniosynostosis. I asked him as the most experienced, how many cases of Lambdoid has he seen and he said....about a dozen. It is that rare.

So....we have a lot of answered questions that are coming to us by the hour, but this is what we do know. He will do the surgery between 10-11 months. So that would be sometime between June 27 and July 27. He said that he would have a team including him (craino surgeon), a pediatric neurosurgeon, a pediatric anesthesiologist, and a team of nurses. Landon will be in the PICU for 2 days, possibly be release on day 3-4 and then be able to fly on day 5-6. It is all so overwhelming to think about, but basically they will do a zig zag cut ear to ear along the top of his head. They will remove and rebuild his skull and replace it. They also have to overcompensate the shape, because his head is not done growing, and they do this reduce the chance a 2nd surgery is needed. Hopefully he will not have to have a blood transfusion, but it is common. He will need regular MRIs until he is 16 to be sure the brain does not try to grown down into a hole in the skull when the spinal cord exits his brain.

So this is what we know as of now. Please keep praying! It is just so much to take in, but we are dealing with it by staying busy and learning as much as we can!