From Julian's COTA journal.
This past weekend, we had to change Julian's NG feeding tube. He doesn't like us to mess with it, as it's pretty uncomfortable to remove the old tube, and even less fun to put the new one in. However, his feed schedule is such that from 10 until 1 every day, all feeds are turned off (except for what he eats by mouth). So, on Friday, we removed his old tube at 10:01, and didn't put the new one in until 1:00. It was wonderful to have him completely free of encumbrances, even if only for a few hours.
Here are some photos we took to commemorate the occasion.