Bolus Feeding, Ghetto Echo

Christa and Philippa trying to assemble a honkin' plastic mobile. We swore we'd never buy a plastic toy for Ford, but after the last two months they seem the lesser of many evils. If it helps assuage your conscience to know that it's second hand... great.

Ford has made the transition from continuous feeds to bolus feeds and so far he seems to be tolerating it. So now he gets a slightly compressed dose of feeds over two hours with one hour off. Eventually he will be feeding more or less like a normal child with several hours between meals, the only real difference being that he still gets it squirted up his nose.

Though it may seem like a small change, the hour without food has opened up some exciting new possibilities for Ford. First off, the cardiac occupational therapist, Astrid (Yes, Dr. Human and his sidekick Astrid - like a superhero team from the 1950s) came by with some suggestions for getting him used to oral feeding. Christa is now encouraged to let him try breastfeeding towards the end of his 'hour off NG feeds' with the hopes that he will be hungry enough by then to want it for more than therapeutic stimulation. Apparently this morning he took to it like...a baby to the breast? and that is an encouraging sign. He can try it for 10mins a stretch up to 3 times a day and hopefully it will not only help him develop his suck/swallow reflex but his overall stamina as well. Since his cardiac output is so limited, small efforts generally exhaust him (he is often coated in sweat) and little workouts like this will certainly help him gain some strength. The other great new adventure is that while his feeds are stopped Ford has nothing that needs to be attached to him. Aside from the leads (which are attached to a clunky wireless device that was probably built in the 70s - god knows what kind of radiation it's clouding him in) and his sat probe, which is easily unplugged, we can pick him up with ease and take him on short walks around the ward. The ward as a few rooftop patios and these sunny afternoons are tempting us outside. We got the go ahead to take him out with us for some play time in the sun (more likely shade) and the thought of taking him outside for the first time is pretty exciting.

Otherwise, there's not much going on. Ford had a routine echo ordered yesterday and I was expecting the usual - the sleak, humming tanks they push around, with their anthropomorphic, round softness and matted, minimalist off-white luster. But the tech walked in with what looked like a steel tea trolley with a laptop on it, an impressive tangle of wires dripping out its back. Compared to what we're used to it looked more than a little ghetto and I said so, perhaps putting my foot in my mouth as she seemed startled by the comment.

Later, after I apologized, it turned out that she just didn't 'get it', didn't know what 'ghetto' meant. So for those of you who are also mystified, I will provide a definition from the dictionary of urban slang:

	ghetto
	1. (n.) an impoverished, neglected, or otherwise disadvantaged residential area of a city, usually troubled by a disproportionately large amount of crime 2. (adj.) urban; of or relating to (inner) city life 3. (adj.) poor; of or relating to the poor life 4. (adj.) jury-rigged, improvised, or home-made (usually with extremely cheap or sub-standard components), yet still deserving of an odd sense of respect from ghetto dwellers and non-ghetto dwellers alike

If you will refer back to entry #4, you will note that I meant it with respect, albeit an 'odd sense of respect.'

Eventually we had to go downstairs for a real echo because the substandard images didn't show a clear enough picture (whoever had the idea to jury-rig one in the first place needs to go back to school) and the same tech had to swallow her pride and try again. As I lay Ford down on the table for his scan, she commented that he only had one sock on (Ford has the best socks - thanks to everyone who bought him/passed on socks, you rock), and maybe he'd lost it on the way down? No, I said, We are just trying to raise him as white trash.

She said she liked me.