Craniosynostosis: Bringing Skull Bones (and people) Together

The Friday full of appointments before John's surgery we continued to run into the cutest little boy and his parents. Axl is just a couple weeks older than John and his parents, Moana and Chase had flown in with him from Hawaii to meet with Dr. Fearon. Axl had single suture craniosynostosis, so he doesn't have a syndrome like John, but the boys were both undergoing the same type of surgery on Monday. Axl in the morning and John in the afternoon.

We have been through the last week with Moana and Chase and have really formed a great friendship. I think we both offered compliments on how the boys looked to each other when the swelling was increasing and at its worst and we were worried about how the kids were looking. It was nice knowing that someone knew exactly how I was feeling at that very moment in time. Both of our little guys have recovered beautifully and almost on the same schedule which has our emotions following the same pattern.

Yesterday this fabulous family gave us a call and asked if we would like to join them for a visit to the Dallas Aquarium. I must admit we were a little nervous getting John out, me for the crowds and germs and Tate for the stares. Well the boys were great and I think they enjoyed the outing very much. Axl's eyes have returned to absolutely normal...his surgery was more in the back of his head so most of his swelling is contained there, but his eyes had also swollen significantly. John's eyes are much better and his temples continue to decrease in size. I of course took my camera, but upon arriving I got the little message "No Memory Card". Nice. So I will post some photos when Moana gets a chance to email me her's.

Meeting Moana and Chase has given me much to be thankful for that we live here in Dallas...it was quite the ordeal to get that family here on a budget with airfare so blasted high. And our insurance, punks as they may be, is being more flexible than theirs. It makes me so mad to think that their insurance company considers Axl's surgery to be cosmetic. SERIOUSLY!!! Luckily, they are well supported in their home community. Chase is a motorcycle chopper guy (I am so not cool enough to know what that is really called), and their family hosted a fundraiser raffling off some amazing bike. The guy that won the bike donated it back and they were able to sell if for additional funds. They are incredibly positive and feel as strongly about Dr. Fearon as we do. Please keep this family in your thoughts and prayers!


Photos from Moana and pics from our fun visit on Sunday afternoon:


This was the only place John was willing to get out of either the stroller or mommy or daddy's arms.




Chase, Moana and Axl stopped by on Sunday to say goodbye and also to gift John the toys they had purchased for Axl on his stay here in Dallas. We will miss this family very much...


Axl is such a cute kid. He has the most beautiful blue eyes and long lashes. Such a sweet boy. I still can't get over how quickly he recovered, I mean I am impressed with John's recovery but Axl's grandparents won't even believe he had anything done when they see him get off the plane on Tuesday! Well except for the fact that his head shape is so beautiful! It doesn't hurt that he has so much hair to hide his incision ;)

On a side note, if you have tried to call me on my cell, and I haven't returned the call, John is to blame. My little scientist thought it would be interesting to see if cell phones float in ice water. I have it drying out, so maybe by tonight I will be up and running again, but call me at home if you need me!