Dallas- Day 1

We have begun our search for the perfect surgeon for Ben's Craniosynostosis.

Yesterday we met with Dr. Genecov. He is a craniofacial surgeon who does lots of cleft lip and palate treatment. Waiting in his office full of children with craniofacial abnormalities made J.P. and me both feel very fortunate that what we are dealing with will most likely be a one-time surgery with a scar hidden by Ben's beautiful hair.

Dr. Genecov recommended what he termed "limited CVR" surgery. This is not endoscopic, as I had been expecting. He said he would make 2 or 3 small incisions and remove a sliver of bone from Ben's sagittal area as well as a small piece on either side of his forehead. Ben would then need to wear a corrective helmet for 3-6 months. The pros to this approach are: less invasive, lower chance of blood transfusion (approx. 20%), shorter procedure (2 hours compared to possible 7), faster recovery (30 hours is average hospital stay) and smaller scar. The cons are: 5% chance of a second surgery, limited view of "the big picture" during operation and helmet therapy. Helmet therapy will most likely require Ben and me to travel to Dallas once a week to have his helmet adjusted- for a possible 6 months. There may be a place in OKC that can do the adjustments, but again, we want the very best people working on Ben's helmet so we don't need a second surgery.

After meeting with Dr. Genecov we met with a developmental specialist, Dr. Sperry. She seemed to think Ben was right on track with his development and that there are not too many developmental delays associated with Sagittal Synostosis, assuming he doesn't have any syndromes associated with it- which we don't believe he does. She said his gross motor skills may be delayed because of his big ole head, but once we have the surgery he should catch up quickly. She said the only thing to look for will be visual processing once he begins to read- and that can be treated easily if we catch it early.

We then went over for Ben's pictures to be taken and thorough measurements of his head taken. The anthropologist took about 100 different measurements of Ben's head- literally! Ben was a trooper through all of this, especially since it was mostly during nap time. He truly is the best baby in the world!

It was a long day, and a lot to process. I had a bit of retail therapy last night at the Galleria while J.P. studied for his CFA level 2 exam.

After my persistence with Dr. Fearon's scheduler, I was able to get us in to see him today. She went out of her way to try to fit us in while we are here in Dallas, and I am so grateful! After our appointment at 1, we will have all of the information we need (hopefully) to make a decision and get a surgery scheduled. I have never read a bad word about Dr. Fearon, so I have a feeling we are going to have a very hard decision to make.

Thank you to my mom and Patty for taking care of Jack and Luke while we are here in Dallas. We would be so lost on this journey without the help from our friends and family! I will update after we get home about our meeting with Dr. Fearon.

1 comment:

  1. Thank you for keeping us updated! This process is so fascinating, and especially because only 4 hours away there are doctors who seem so positive about the outlook for your beautiful boy! Good luck today! I'm very glad you got some retail therapy, too, for your own sanity. Poor JP, going home to study! My prayers are with all of you!