Success!

I remember getting the call. Mike was on the other line and he was so upset that his voice was shaking. Since he was just leaving a check up at the neurosurgeon's office, I instantly went on high alert.

"What's wrong?"
"The PA is refusing to prescribe a helmet for Nicholas."
"WHY?"
"He said he doesn't think enough fluid has left his brain. That there's not enough brain matter yet for a helmet to work."
"Turn around."

We had spoken to Nicholas's pediatrician. He had agreed that it was time for cranial band therapy. We had spoken to all of his therapists. They agreed it was time for cranial band therapy. Why would the neurosurgeon's PA disagree with everyone else? And what had he said that had reduced my normally even keeled husband to shake with anger and defeat? I told Mike that I was coming to the office and to wait there for me. He faltered - told me the appointment was over and it was probably too late - except that our next followup wasn't scheduled until after Nicholas was over a year old and by then it would be too late to start the therapy. I told Mike if I had to follow the PA or the neurosurgeon to their cars when their days were over I would sit and wait for them. I suspected that an upset mother is the last thing the physician wants in his waiting room full of patients, so we would be brought back pretty quickly.

I spoke to the receptionist and the office manager quickly came out to ask me why I needed to see the PA. I firmly told her that he was refusing to prescribe a helmet for my son and we needed to discuss his reasons. Not surprisingly, we were brought into a room fairly quickly and the PA walked in shortly thereafter. I asked him point blank why he felt that a helmet wasn't the answer for our son.

He gave reasons. Some of them were probably valid. I trust my son's neurosurgeon and his staff immensely. The neurosurgeon has literally been inside my son's brain, and the likelihood that he'll be there again before Nicholas ages out of pediatric neurosurgery is high. But they don't live our life. They get to go home and leave brain surgeries and other related issues behind them. They get to sit down to dinner and talk about things like school and the new HOA rules and what they're doing this weekend. So while the office is staffed with amazing people, their passion will never equal ours. It simply can't. I understand that. So while I have literally trusted them with my son's life, I was not going to sit by and let them make a decision lightly that had the potential to impact Nicholas's life forever.

His reasons included that there's little literature or research on hydrocephalus patients and cranial band therapy success. That it would likely be unsuccessful because the shunt was still working on the tedious job of draining his overfilled ventricles. That, sure, we would move the skull but liquid moves a lot easier than brain matter and so it would probably just move back. That he just didn't think it would work.

I looked this PA in the eye and asked him if it would hurt Nicholas. If it could hurt him. He said no, of course not. So I asked him why not just try? He said we could try when he's older and his ventricles are drained back to normal sizes. That he could have a cranial reconstruction surgery at that point. And, haha, he just happened to know a great neurosurgeon. We stared at him. I asked him why we shouldn't try something that didn't require surgery and that Nicholas would never remember and instead jump directly to a surgical procedure, further recovery time, and possibly something that would traumatize him as he's older.

Obviously you've all seen the pictures, so you know that we walked out of that office that day with a prescription in hand. That the next fight was with the insurance company to get coverage. That we won that battle too and that Nicholas's skull has been gradually been re-shaped by the helmet and a dedicated orthotist who shaves out pieces of the helmet and adds pads to help Nicholas's head become less flat and more symmetrical.

I previously posted that Nicholas was at 26 mm asymmetry when this journey started. That his was the worst case that the orthotist had ever seen. That the challenge of taking on a hydrocephalus patient was almost too overwhelming. And that it's working. The helmet is reshaping Nicholas's head to be less asymmetrical. While some of our goal was to fix his head for vanity reasons, the vast majority was that he was having developmental difficulties because of the head shape. He was having a hard time sitting up because one side of his head was heavier than the other. He was having trouble rolling over because he had a giant cone in the back impeding him. Last month's measurements showed Nicholas at 9 mm asymmetry.

Nicholas met with his orthotist today and measurements happened. Accounting for some human error, Nicholas's head now sits at 5-6 mm of asymmetry. A head is considered to be within "normal" ranges of asymmetry when it's under 5 mm. It worked. It worked exactly like we hoped it would. And without surgery. Without a traumatic procedure. Sure, he had to wear his helmet a little longer than the average therapy length of 3 months, but so what? He'll never remember that time. Clearly this was a fight worth fighting.