I called Cally the Bronx orator for a reason. He has the cutest little East Coast accent. I was so surprised when he started school in October there was a huge concern this accent meant he had a cleft palette. Say what? We have gone through non-stop testing since than. Just when I thought it had all had been put to rest in our second Cleft Palette Clinic with an endoscopy that showed a weak but not compromised palette; Chris decided to seek one more opinion because he has an odd shaped head. That is when we got some devastating news.
It was freaky because we had the CT Scans and we are sitting there talking to the Pediatric maxillofacial surgeon show Cally his skulls and it is a light mood. Than he tells us Callum has Craniostynostasis. Seriously? What is that? Was my first reaction. After he explained how it is a serious birth defect that requires brain surgery I felt crushed. After having endured what I did last year I really felt like it wasn't a big deal because my kids didn't go through it. Now feeling helpless to protect him and understanding what the surgeon was saying I was just really sad.
This happened 3 wks ago. To deal and cope I called every friend Doc I had and really found out what this was all about. I immediately set up a 2nd opinion at UMC with a pediatric neurosurgeon and prayed. Well than that doctor gave me the happiest surprise. He doesn't have Craniostynostasis but he has just a few after effects from being a premature infant and with speech therapy and time he will grow fully into his head and it will round out and the palette will close correctly.
So where we are at now is that we are looking for a 3rd opinion. These are two of the best pediatric surgeon's in the city and while I trust the neurosurgeon over the maxillofacial surgeon a little more I have enough worry to want to make sure that it is totally not any sort of cleft or weird suture brain problem or anything else. The next week I will drive him up to Albuquerque and we will see another neurosurgeon from UNM. I keep the prayers high for Callum and I'm hoping this will be the last doctor for him. He is too sweet and too cute to have to go through something like these surgeries pose.