Thursday, February 12, 2009

Treating the baby, not the x-ray (part 2)

Max gave us a little neurological scare today. In addition, his hydrocephalus and associated (and evolving) ventriculomegaly are a constant source of worry. It's clear that Max is developmentally delayed, especially when compared to his older brother at the same (gestationally adjusted) age. We tell ourselves that this is only natural: he has not been in the ideal environment to develop and he has had a really tough course, with repeated near-brushes with very serious medical conditions. When we finally get to bring him home, he'll need aggressive therapy to learn how to eat and to make his other milestones.

All of that said, Max is approaching four months of age; even based on his original due date he's almost two months old. With Felix, we saw early indications of his personality that have, so far, continued to hold. Carolyn and I talked about what we're seeing in Max.

Today, for example, as Carolyn was changing his diaper, Max was waving his arms and legs around and crying just like a normal baby. But this was the first time she had really seen this kind of behavior. Slowly, it seems, Max is joining the ranks of normal babies. In addition, Max was fascinating by morning rounds, looking from speaker to speaker as the conversation progressed. Dr. R. has encouraged us to read to Max, just so he can hear the candence of normal speech; he seems hungry for it.

The picture that's emerging is of a sweet little boy who is curious about the world around him, loves to be cuddled, and who is bearing all of his trials with a kind of good-humored patience.

I mention all of this because it's interesting by itself. But also in light of one of the best pieces of advice I feel we've ever gotten. A pediatric neurosurgeon at Children's Hospital told us that the medical world will be full of doctors who look at ultrasounds, x-rays, MRIs and the like and sound the alarm. His philosophy, however, was to treat the patient, not the x-ray. For all I know, this might be a hackneyed cliche of medicine, but it sounded fresh to us. And, more to the point, when I stare into Max's face, I see a baby who, despite it all, is eager to get out into the world and explore it.