To crimp the tube, I thumb a tiny red plastic roller down a slide. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. Because he can't eat, he takes in formula through the night via a feeding system. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. That sounds simple enough, doesn't it? But with Walker, everything is complicated. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me. I count the grunts as I pad my way into his room: one a second.
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