We met with the pediatric neurosurgeon today about Phinehas’s head shape. We went in expecting to be told “Yeah, it’s a mild case. He’s developing on schedule. He’s happy. We’ll keep an eye on it. Nice to meet ya, but see ya later!”
That isn’t what happened.
Instead, he’ll be having surgery to correct it. This isn’t something that “just goes away” or something he can outgrow. His skull is fused. His brain can’t grow as it needs to. There are more signs that the brain is already starting to “get creative” on where it can grow; there are little, tiny bulges up above his ears – a sign that his brain is getting squished. I’ve suspected that he occasionally get headaches (but how can you tell with teething babies?) and it is quite possible with this condition.
The next step? We’ll meet with the plastic surgeon that this neurosurgeon practices with. They do the surgeries together on Thursdays and Fridays. Someone from his office will call to set up an appointment, then insurance will get contacted and a surgery date will get set.
We want to get a second opinion, but according to the surgeon, there isn’t a surgeon in America who will prescribe a different treatment – it’s just the standard treatment. In fact, I’ve already called around Omaha and all the major hospitals here don’t have someone that treats pediatrics – they all referred me to the surgeon we visited! I’m not sure if that’s a advantage or a disadvantage of having a Children’s Hospital in town!
The surgery itself is 3 days in the hospital and an incision from ear to ear across the top of the head. On the way home, Jeff remarked “Well, he probably won’t be able to rock the bald look!” (Course, that was after we got over the shock of having to go through this.)
May God protect my little one…




Hi Jayme, I stumbled on your blog about a year ago and have been following your blog ever since but never commented before now. I’ve loved following your journey so far especially seeing Phinehas’ grow. I’ll be praying God gives you all strength during this time and guides both your and the medical staff’s decision making. God bless!
My heart goes out to you guys with this one. So tough. But, if anyone can bounce back from this quickly it’s your cute, smiley, always-happy little guy!