Lessons

Awhile back, I posted about the fight that we'd had with the PA at Nicholas's neurosurgeon to get a prescription for a cranial band. And that we'd seen such success with it.

When Mike had had his appointment with the PA, he had been told that because of the severity of Nicholas's hydrocephalus, the best thing we could do for him as parents was to take him home and make him as comfortable as possible for however long he would have. We had already seen progress from him at that point and refused to believe that we had reached the end of the progress. While we weren't going to fight that fight with the neurosurgeon's PA, we didn't plan on not moving forward with the therapies that he was responding so well to.

Last week, Nicholas had his first follow up appointment at the neurosurgeon's office since that fight. And he was scheduled to see the PA that had originally denied us.

Mike brought Nicholas (and Emily!) to the appointment. When the PA walked into the office, Mike had Nicholas sitting up on the table - independently. The PA walked in and was shocked the Nicholas was sitting up on his own and mentioned it. Mike nodded and waited for the measurements to begin. Nicholas's asymmetry was at 4 mm. The PA re-measured and looked at Mike. He was in awe. He said, "It worked. It actually worked." He couldn't believe it.

During the course of the appointment, Mike found out that the PA had truly believed that Nicholas would be severely disabled and that we would likely not see much development out of him. As it turns out, the majority of the fluid from the ventricles was pooled in the front of his brain during gestation and had caused damage to the frontal lobes. The frontal lobes are primarily responsible for gross motor skills (such as sitting, crawling, walking), as well as the swallow function. It makes perfect sense, then, that Nicholas has difficulty swallowing without aspirating and also that he is delayed with his gross motor function. But he's catching up. He probably won't walk before he's 2, but he very well may crawl. He's sitting up, completely unassisted, for 30 minutes to an hour now, where previously we were lucky if he sat unassisted for more than 5 minutes.

The PA told Mike that he was wrong. And that he is amazed in the development he's seeing in Nicholas. That it is completely obvious that the brain is regenerating itself and that nobody can tell what Nicholas can or will achieve. He credited us for fighting back in every area that we could. For being Nicholas's advocate against even him (the PA). The PA ate some humble pie that day, and for future patients of his, I am eternally grateful that he had the self-awareness to realize he had misjudged and that he could learn from his mistake. I felt a tiny stab of retribution too, of course, but mostly I'm just glad that he could reflect on his analysis and realize that perhaps he doesn't have all the answers. For the rest of his career, he will think of the little boy who surprised him when talking to parents. The little boy who refuses to stop.