12/13/2010 Catching up

Please forgive me for grossly neglecting my updates. Life is full. There are several significant events that have happened since my last post including: Dean's 6 month follow-up, his first birthday, and a CAT scan. The follow-up at John's Hopkins was a bit disappointing. We didn't receive any bad news, but the disappointment was that there was really no news at all. Our Plastic surgeon, Dr. Simmons moved onto another hospital (hopefully we won't need him anymore, but still a loss for JH.) So, we knew we would see someone new from the plastics team, but thought we would still talk with Dr. Ahn our neurosurgeon. When we arrived we found out that Dr. Ahn was in emergency surgery. A follow-up is not very reassuring when you first have to update the new doctor you are meeting. Measurements were taken and all seemed to be alright, but his head has not grown any wider which is something they will watch for. Over all, there wasn't really any clear positive or negatives. While in the waiting room, I spoke with another mother whose daughter was 1 year post surgery. Dean's head pulls in at the temples still and that was a concern I had. She told me that her daughter's head shape had been the same and that those areas just popped out as she grew. That was more reassuring than anything the doctors told me. Another interesting thing to note about our visit. Dean, normally content and happy, was a disaster that day. I have no doubt that he knew where we were and didn't like it. I never saw him so fussy. So much for hoping that he would forget the whole thing. In October, we also celebrated Dean's first birthday. We don't usually do much for first birthdays, but we wanted to celebrate God's provision for Dean's long first year. We had a large family celebration, and asked that guests bring a donation to the Children's House and CAPPS kids instead of gifts- a chance for us to thank those who helped us this past year. We also participated in a balloon release to increase awareness of craniosynostosis. Many friends and family (I posted a photo of my Aunt in KY who participated) released balloons for this- if you find one, let us know! Dean's party was one of the highlights of our year! I recently received a routine order for a CAT scan. Dean's first attempt at this was terrible. He fussed and squirmed; there was no way he was going to lie still for the scan. I called the Pediatrician, and he prescribed a one-time dose of Chloral Hydrate to make him sleepy. It worked like a charm! He slept right through his scan the next time, and we are now waiting for the results. Praise the Lord! I am hoping that the results of the scan will fill in the blanks of the follow-up. It will give me extra peace of mind to have Dr. Ahn get a clear look at what is going on. I will post the results of his scan when I get them or at least after Christmas when the holiday rush dies down. Thanks to everyone who has continued to read this and pray. I keep meeting parents of cranio kids who tell me that this is helpful to them, so I will let you know how Dean progresses!