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Thursday, February 3, 2011

Probably jinxing myself but...

We are on day 2 of the every-30-minute-for-5-hours water bolus feeds and things are still going well. She still hasn't thrown up when I've given them to her (it helps that she's pretty much over her cold/cough, knock on wood). Today I even did 7 in a row (30ml/half hour for 3 1/2 hours) and she was fine. I'm going to fiddle with things a little more over the next few days and see if maybe we could do some formula in a few of them.
Aside from tolerating the actual feeds (or drinks, whatever you want to call them :), she also seems to be generally happier during the day. She's never been on a very consistent schedule because it's hard to do that when her schedule is dictated by therapy appointments & doctor appointments & whatever the rest of us have going on but yesterday and today she's been really happy and cooperative, even when it's naptime. I put her in bed after her 7th water bolus had time to settle and hooked up her formula in the feeding pump while she took her nap. She had a nice 3+hour nap for 2 days in a row, which is not normal for her, and when she woke up she just played happily in her bed until I came & got her. Now she's playing in her little cage play area in the living room while the rest of the formula goes in and she's as happy as can be. I hope this lasts but even if it doesn't, I'm very grateful for the 2 happy days she's had! :) (especially because I have caught something, presumably from any of the 4 sick children I've been taking care of, and I feel terrible today) I'm feeling optimistic about this because even if she still has to have her actual "food" through her J tube for a while, just being able to give her stomach practice with the fluids is awesome and being able to allow her the freedom to walk around the house and play while she's not hooked to the pump is priceless. (even if she IS getting into EVERYTHING :)

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