Sunday, January 31, 2010

That underpants look

Felix got new Thomas underpants from his godmother, in hopes that he might show some more interest in leaving his diapers behind. Instead, yesterday during our day of being snowed in, Felix found a new, much more fun application for the undies. Here's Max sporting the "Percy Beret" model.

Wednesday, January 20, 2010

That pirate look

With eyepatch
Originally uploaded by andreas.lehnert
As Carolyn mentioned, Max now wears a patch over his stronger eye for half an hour each day. Interesting fact: pediatric eyepatches come in gender-specific varieties. The doctor only had patches designed for girls when Max visited, so that's what he wore for the first week. Since then, we've gotten several boxes of patches designed for boys. As you might imagine, the dominant theme is of pirates; the patches sport cutlasses, boats, and the jolly roger. However, first impressions are hard to shake, and I'll always associate these patches with pink unicorns (shown in this picture).

Tuesday, January 19, 2010

A few updates

Max continues to enjoy a stretch of healthy days (since just before Christmas). He's been eating well -- pears, avocados, tofu, Doris' special lentil soup, and cracker snax. I was certain that he had gained a ton of weight over the last 2 weeks, but in fact he gained 2 ounces, bringing him to 20 lb, 7 oz. I was a bit disappointed that he hadn't gained enough for us to cut back his nighttime feeds again, but on reflection am glad that he is healthy, happy, and gaining even a little bit.

Earlier this month, Max had a routine check-up with the ophthalmologist. The good news is that his optic nerve looked good, there was no indication of intracranial pressure, and he still just has pseudostrabismus. But the doc did detect some laziness in Max's left eye, so the plan is to put a patch over his stronger right eye for 30 minutes per day for the next 3 months. If this doesn't strengthen his eye sufficiently, he'll need to have glasses.

Max has been really active lately, and over the long weekend practiced cruising along the sofa and coffee table (he has a few chin scrapes to show for it), climbing stairs, generally squirming around. It is a delight to see. New NG tube today, after a "free" day. We see the GI nurse practitioner on Monday and will get further guidance about the feeding plan then.

A tube-free day

At the music table
Originally uploaded by andreas.lehnert
It was time for an NG tube change (those things get gross around the 3-4 week mark), so we pulled it out this morning and let Max be free for the day. Here he is playing at one of his current favorite toys - the music table.

Tuesday, January 5, 2010

Max plays the shell game

Max is starting to experiment with gestures. He will sometimes wave, although he's probably confused about what waving means because when he flaps his hand at us it sets off a few minutes of furious waving by every adult in sight (house rule--no exception for visitors). But he's always watching us and, in the manner of children, sees and hears gestures and words that we don't realize we're making. For example, Carolyn has been playing the shell game with Max; he likes it and always finds the ball (at some point we're going to have explain to him that he should decline invitations to play on the sidewalks of New York City). Unconsciously, Carolyn turns up her palms when asking "Where's the ball?" When Max now puts a ball down, he will sometimes mimic the gesture, looking like a tiny Borscht belt comedian hitting a punchline. Apparently, Max thinks that palms up means something like "I've put down the ball".

The video below captures some of this, as well as a lot of miscellaneous domestic chaos. (Click here if you can't see the embedded video.)

Max Plays the Shell Game from Codered Summer on Vimeo.

Saturday, January 2, 2010


As Carolyn mentioned, Max has recently begun crawling (with help) up carpeted stairs. I took the video below a couple of days ago; I'd say Max has gotten even better at climbing since then.

Stair Climbing from Codered Summer on Vimeo.

One year ago

Originally uploaded by andreas.lehnert
This picture shows Max in what Carolyn and I referred to as the "McMansion" crib. He had outgrown the little lucite boxes used for neonates, but he wasn't able to survive without intensive medical control.

I can't remember now whether, when this picture was taken, he was in the step-down NICU or still in the high-intensity ward (indeed, the NICU would sometimes consolidate all of their patients into a single room when business was slow). I do see that Max was getting supplemental oxygen via a nasal cannula, something he needed off and on for much of his stay at Georgetown.

Reading back through our notes from late December and early January, I see that Max's clinical situation at the time was still precarious, and that we were considering a variety of surgeries--shunt, Hirschsprung's biopsy and, for the first time, something called a "fundoplication".

I also notice that I expected these matters to be resolved one way or another in the near future. But January 2009 would be a long, tense wait during which nothing in particular happened. (Our insurance company took the same view and retroactively denied coverage for Max's hospitalization in January; they later reversed themselves so we were not impoverished by the stroke of a pen.) In some sense, the whole of 2009 was an exercise in patience. In fact, I would divide the year into thirds: the first third in the hospital, the second third grappling with the hospital-at-home, and the last third watching Max get himself organized and start to make progress.