Wednesday, August 03, 2005 at 12:58 PM EDT

Hello; I'll try to post while Sam is napping.

Her trach was downsized and capped, and should come out entirely tonight or tomorrow morning. So far she's doing well w/the transition. They are stopping her feeds for hours at a time, in the hopes that she'll begin eating by mouth; they are also stopping them before & after meds, in the hopes that will curb some of the vomiting, which is still a problem. (She often vomits after she gets her meds.)

Sam was officially given "out of room" privileges Monday,
w/restrictions, of course, as she's still in isolation. (We do follow some of the rules.) She's been in lots of wagon rides out to the play deck on our floor, and she's enjoying that. It was her first time outside since early May; she was wearing her sunglasses, and looked very Hollywood, according to the staff.
There are only 2 things she's interested in now: wagon rides and Sprite,
which she now drinks from a big-girl cup, as she has boycotted the sippy lid.
The thrush seems to be clearing, as she's opening her mouth again, and ate a little apple sauce today.

She's also speaking;
today she said "please" when she wanted more Sprite. (She's also crying again at full volume! Never thought I'd be happy to hear that sound.)

The plastic surgeon saw her during a wagon ride, and checked her over in the wagon, and said the skin looks great. A finger on her left hand is tightening, though, and soon she will start wearing a splint on it at night, so she doesn't lose any range of motion there.

Her meds are continuing to be tapered, and she should be off them by 8/21, if all goes according to schedule. We should move back over to the A bldg. by the weekend, after the trach is out and she's been observed a couple days.

Some not-so-good news:
pseudomonas is back in the stool, and
her kidney test results showed that function is pretty weak, and she's likely looking at long-term dialysis. This is disappointing, though not totally unexpected. Her kidneys took such a hard hit during this illness.

Thanks for the continued prayers,
Jessica

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Wagon Rides
FASTER, Mommy ... Go Faster!

Glad there's some GOOD News to pass around!!

**GO*, Sammy!

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