Sunday, February 23, 2014

Tying a Knot and Hanging On

Well, our swimming start to being altogether as a family lasted 1 week exactly. After our first American check ups, and a jaw dropping set of plotting on the growth curve, it was clear Princess P needed to be admitted for a more thorough once over, and likely supplemental feedings. And after her EEG, MUCH better seizure control. The real monkey wrench actually has proven to be her gut though. Too many years of dehydration and a propensity for slow motility just because of her CP, and she has a belly full of stool so hard as to be, quite literally, rocks. She's not a happy camper, and who could blame her....My belly hurts thinking about it. Can't go up on the feeds, but it is no simple thing to reverse the constipation either. She's being quite the trooper, in spite of it all. She managed to get her brother for roommate, in a misadventure serving only to give Mr. P & I more grey hair. Thomas randomly developed cellulitis on his face, and he's needed a bit of stronger antibiotics to get that settled. The staff here has been wonderful, and super accommodating. Thomas is thrilled with their movie collection (and Penny seems to like Pok√©mon, lucky me ;p) Penny meanwhile, is busy charming everyone who comes in her path. Except to fuss at the intern for stroking her hair (sorry kiddo, you *do* have fab hair, it's hard not to touch!) She's shown off a bit for therapy services, played opossum during her hearing screen, and had decided the best spot to sleep is really the cot (2' wide) that's supposed to be Mom's. While entirely productive, I am 100% ready to be HOME.  Tommy's lucky day should be today. Pen & I have stopped holding our breath ^_^

Meanwhile, back at the ranch....Mr. P, the big kids, and some wonderful church friends are holding down the fort. Fanny is settling into a little routine, learning to love vanilla ice cream and mooching Paul's peanut butter toast (in microscopic pieces, lest you want peanut butter toast pulp spat out, ick!) The kids are quite certain that she's saying coat, and it seemed as though, while indistinguishable in any language, she was babbling in her play too. I get to live vicariously via Skype, and see her learning to brush her hair all by herself last night.  

I've managed to snag a few cute pictures
 The nice PT ladies tricked out my chair, so I can lean back a bit.  Bibs, while so *not cool* for my teenage princess, have become a necessity item. I don't think she's ever been so hydrated in her life....and she has no earthly clue quite what to do with spit, poor baby! The nurses aren't quite sure but what we should weigh those bad boys at the end of the day & count it for output.

 The EEG. We chucked the multi-coloured leads coming out the back looked like dreads that would make George Clinton proud...
 
 
So we continue to wait. Prayers for speeding healing, and insight for each person on her care team are greatly appreciated! 
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