Last night I didn’t hook up the feeds correctly at 11:00 pm and JT went 6 hours with no nutrition or water at all. Jodi tried to push some water with a syringe during naptime but he threw up…he’s got to take extra fluids so that he doesn’t dehydrate now that he’s off nightly IV fluids. He’s up to 55 ml / hr. tonight and we’re really hoping that it goes well.
Today he went for Honey Bunches of Oats cereal in a big way, “chomping them right up.” He may have even swallowed a few flakes, who knows? We’re just excited to see him so interested in food.
Heather and Matt and Carter stopped over for lunch and we had a sweet visit this afternoon. It was great to hang out with them and the boys were pumped to have visitors, especially a visitor Carter’s age. We are so much enjoying our first tastes of “normal.”
JT’s skin flare-up is bad, raised and red and angry everywhere. Jodi gave him a bath tonight and she said the dead skin was flaking off everywhere, filling the tub. She lubed him up good so hopefully it was good for him. No one can tell us how to help him with this so we ask you for prayer. Otherwise he’s a happy boy at home, and that’s what counts.