Although some of these may not help everyone, I would like to share a couple things I figured out that helped us, in case they may be useful to someone else.
Feeding tube info: We're on tube #3. To do gravity feed, we have the gtubes with the part that hangs out. We were directed to tape it to her tummy. Instead, I got cotton stretchy fabric (like tshirts) and sewed a velcro strip along the ends of pieces that go around her middle. It holds the tube in place and is far more comfortable than tape. Also, tube 1 came with a clamp, tube 2 didn't so I used a small chip clip on the tube for 11 months. The surgeons don't understand that HD means all muscles, including tummies, are contracting randomly so we needed the tube clamped to avoid messes.
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