There was some progress for Nicholas this week – they’ve increased his bottle intake, in terms of both volume and frequency, and they’ve started to reduce the amount of food he’s getting from the NG tube. He’s also gaining some weight. Good strides, just not as fast as we would like. But we keep telling each other “his schedule”, so that helps us get through the days. The days are usually pretty long for us anymore – for me at least, I try to get some work done during the day and head to rehab in the late afternoon, putting me home anywhere between 9:30 and midnight. Cathy usually goes there in the mid-to-late morning, and we come home at the same time. We’re ready to be done with the current routine and get him home.
The stroller ride earlier this week was interesting, at least as it was reported to me. Apparently, the boy was not too keen on being blinded by the sunlight and was just generally fussy through most of it, but by the end was handling it pretty well. It was also an experience to see just how much baggage is required when he travels – and it’s a lot. Portable suction, ambu bag, extra trach collars, suction catheters and probably a few other things that I’m forgetting. Good thing we drive trucks.