Friday, September 09, 2005 at 08:46 PM EDT
Sam continues to do well;
I'm really going to try to get new pics up soon!
Her kidney labs continue to be stable, so we won't go back down to Children's for 2 weeks, when we'll see the kidney docs again, as well as the plastic surgeon. If she continues to not need dialysis at this time, they'll remove the catheter early next month, when she also has a scope scheduled by ENT to have a final look at the trach site, to make sure everything healed well. (That way, she's only under anesthesia once; they try to double up on necessary procedures when they can, so as to avoid multiple surgeries.)
We're hoping her PICC line can come out in the next month or so, too, and then we'll just have that pesky feeding tube. She's lost a little weight since they cut the feeds down to 12 hours; she's eating a little more, but not near enough. They're not overly concerned, as she's still a healthy weight -- those of you that have seen her can vouch for that!! -- but of course, we don't want her to continue losing. They've suggested a shake, kind of like Ensure, but low protein, for her kidneys, but we're having trouble tracking down the one they suggested -- our pharmacist couldn't find it in the computer, so they'll have to give us another name. We can also up the feeds again, but it would be great to have her take something by mouth. She drinks a lot of water, but, alas, no calories in that. A lot of liquids she would drink -- OJ, milk -- she can't have, due to her kidney diet. So the eating thing is still a challenge, but each day she's more willing to try a little something, so we'll keep plugging away!
She continues to laugh and dance a lot, and loves to sing along with her new favorite -- Bear in the Big Blue House. Yes, the Australian guys finally have some serious competition. She's also counting a lot, and is pretty good at 1-5, and is learning some colors, too; she amazes us every day! She visited the library this week, and her friends at Precious Resources, too; it's nice for her to see people other than Mom & Dad, though Dad will be quick to tell you he's the fun one! Mom makes her do her stretches, and she hates it, but they must be done. We meet w/a rehab doc next month, at Children's, who specializes in limb deficiencies; we're hoping to begin early prosthetics training sometime this fall.
Sam's sleeping away right now, gearing up for the weekend;
hope everyone has a nice one!
Thanks,
Jessica
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Good to hear Sammy continues to Make Progress!!
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