Henry turned 16 weeks old on Monday. That’s four months. The doctor told me to wait until his four month well baby visit to reassess his head shape for a neurosurgeon referral.
I’ve been so worried about his head. I tried to schedule his well baby check up for sooner, but they didn’t have any openings. Instead I made a sick visit appointment to discuss it with the pediatrician.
I’ve known for months now that his head isn’t right. I stare at it all day, every day. I kiss him and pray that I will wake up and find his head is miraculously straight, no longer lopsided. But that hasn’t happened.
The pediatrician thinks Henry may have craniosynostosis.
He said he can feel the sutures, but he isn’t sure if they are fusing closed too quickly or what is happening. Henry also has a metopic ridge, which is a bony ridge from the suture that runs from the soft spot down the forehead to the bridge of the nose. In some cases it causes a ridge and there is no worry, in other cases the ridge is from the suture fusing wrong.
The pediatrician was sad and serious. I’ve never seen him sad before. He always wears huge goofy oversized glasses, plastic neon colored ones. He always makes jokes and laughs. You never want to be the parent that makes the pediatrician pat your arm in sympathy and reassure you that your boy will probably be fine.
The cheerful secretaries at the front desk were somber during check out. They marked Henry’s neurosurgeon referral as “urgent” and gave me instructions to call the children’s hospital today to be sure they are processing it.
I called this morning and it’s being processed. It’s in review by the triage team. I guess they have a team who looks at each child’s info and then decides how soon they should get an appointment and what tests need to be performed prior to the appointment or during the same visit.
I’m expecting Henry will need a CT scan. I want him to have one. I want to know 100% for sure if he has craniosynostosis or if he just has positional plagiocephaly. Plagiocephaly typically just requires a helmet to correct it. Craniosynostosis is surgery to break apart the fused skull bones so that the brain can grow properly.
My poor sweet boy.
The surgery is so rough. I don’t want him to go through that.
The hospital is three hours away from where we live. He’ll be going to Cincinnati Childen’s Hospital. The University of Kentucky is about 45 minutes from here, but everyone I’ve talked to who has kids with special needs says that the clinic is dirty and the hospital is not so awesome. Henry is going to the best hospital I can reasonably get to.
I hope they call to make the appointment soon. The wait is killing me. I just need to know. In some cases the unknown is worse than actually facing the problem head on. (No pun intended.) Know what I mean? I can drive myself crazy wondering and waiting. If they say he has craniosynostosis I will cry (again) and then I’ll know, and I’ll prepare for the surgery and recovery.
All of this makes my belly hurt.