Thursday, June 4, 2009

Another report card

Carolyn took Max back to Children's to visit yet another specialist; in this case, developmental pediatrician Dr. PG. She's in the same business as Georgetown's Dr. Kz, who gave Max his first report card back in December, but has a reputation for breaking bad news more gently and hence is widely beloved by area parents. Dr Kz, by contrast, is widely beloved by area early intervention programs who need straight checklists of abnormal characteristics.

But first, a digression on Max's weight. Specifically, the fact that he hasn't gained any in more than a week. What's more, he's clearly gaining weight in that big skull of his, so the non-head part of him is probably wasting away. At this point, Carolyn is trying to coordinate among the developmental peds, the regular peds, OT, speech, and Children's GI clinic, all of whom are giving slightly conflicting advice. In the end, Carolyn focused on the fact that a few weeks ago we changed Max's feeding to try to get him to take more food by mouth. He usually succeeds, but only after a mighty struggle that burns more calories than he takes in. He's had his chance to turn into a bottle fed baby and he didn't make it this time. The revised plan is for Max to get three or so bottle attempts per day; they will be limited to 20 minutes each. At the end of the day we record what we managed to take in, subtract from 788 ccs (his new daily target volume) and divide by 14 (the number of hours of his night feeding). At last we break free from the tyranny of dividing by 43! We'll reassess in a couple of weeks to see how he's doing. In the back of everyone's mind is the fact that by then Max will likely have, or be about to get, a shunt.

Dr PG lived up to her reputation. She didn't give Max a full physical assessment, so we don't have the same list of skills with pass/fail grades. She did note that Max was developmentally delayed (something one frankly doesn't need to go to medical school to conclude). PG did, however, rule out the most catastrophically bad outcomes. At this age, one can diagnose severe CP, and Max appears to be in the clear. Of course, as the neurosurgeons say, "you're never the same after the air hits your brain." Max is doing okay right now but the air has yet to his brain.

According to Dr. PG, preemies are addicted to exactly the wrong kind of stimulus. If it flashes light and beeps, preemies like it even though Dr. PG argued that this was precisely unhelpful. This explains the zero TV policy recommended for preemies. In addition, preemies can't say no stimulation: why focus on one toy when there are two nearby? And a jangly music box?

Instead, she has a set of guidelines that, as far as I can tell, boil down to the dictum of asking how something compares to watching television, and doing the opposite. So: no toys that emit electronic beeps or flash lights and, of course, only one toy at a time. The toys he has should be small and easy for him to grab and manipulate. It's good for him to see his hand wrapped around the toy while waving it in front of his face. Max loves watching ceiling fans, but, of course, that's just the preemie background at work. We've been advised to switch the fan off. Finally, it's great for Max to watch Felix, but he doesn't need a toy at the same time.

I think Dr PG advises us to encourage Max to watch his brother for two reasons. First, Felix is a real human being, a species hospital babies like Max may be unfamiliar with. Second, Felix is moving around unpredictably in three dimensional space. From experience I can say the NORAD would have difficulty tracking Felix accurately at certain times of day. It has to be great practice at recognizing spatial relationships.

Just as interesting as these guidelines were the things Dr. PG saw in Max that she thought were positive. One really struck me. Dr. PG noted that Max would smile before had been smiled at. In other words, he isn't aping what he sees other people doing--he's simply and honestly delighted at the world.