Haley’s Giggle

The new feeding tube was put in. I had seen diagrams of the “Mic-Key” but i admit i was unprepared to for what it would look likeon her body. If you are in the science world, it looks like the top part of a plastic micro test tube, the one where the top is permanent. If you are in the football world, it looks like a Gatorade “keg” but without the spigot part. There is no tube anymore that falls over and between her legs, which means less pulling and a lot less irritation (which also means, at least for now, less topical medication). It’s a bit harder for the one putting up the feeds, because you have to attach a tube to the mickey, then attach the feeding bag tube to that tube. So it’s quite a bit more direct contact with the entry site. But, ever since the pain had subsided, she’s started to get more andmore comfortable with activities that may touch her stomach (she’s even resumed a partial sleep on stomach position, something she hasn’t done since the first feeding tube went in).  Time will tell if it actually improves her eating habits/appetite. So far not, but it’sonly been a week.

The endoscopy/colonoscopy showed nothing in particular, though the results of the “scopies” will be told in the biopsy results, due any moment now. They did find a small bump on her esophagus, but they assured me it wasn’t a mass, or vascular (i.e. not cancerous looking). they will biopsy it the next go round, as they didn’t think there was something to be concerned with now. and. well. no need to worry until you have to.

We hope everyone is enjoying their holiday season, and wishes those who have been through a tough year an even better one. 

On the way to one of Haley’s recent appointments, Haley wore her red “Bono” sunglasses, Van Haley sweatshirt, and pink tutu. Everyone who walked by her engaged with her, and smiled at her.  She was the happiest kid in that hospital.  That was not the first time she’s worn something “interesting” to the hospital, but the lesson is this: to anyone who must walk the halls of a hospital, if the end of the hallway is going to lead to something not so fun, make sure the trip down the hallway is.

Haley won today. Will write more. Doesn’t like ether and anesthesia. results to come. stay tuned.

Happy Hannukah, y’all

And to Auntie Jojo and Uncle Dave, and the rest of the Dallas/Montreal/DC extended family, Congrats and welcome Jake. Glad all of your platelets came with you.

For those floowing closely, you may remember that Haley’s last birthday present was a colonoscopy/endoscopy. How on earth will we top that, you say? Why, with another colonoscopy/endoscopy! A last minute cancellation by another patient has opened an immediate morning slot for Haley.  I can think of no other person though who would consider a new and improved feeding tube (shorter and cuter than the one she has in now, appropriately called the “mickey” button) a gift than Haley.  The endoscopy/colonospcpy part will not be appreciated as much, though i know she’ll come through the anesthesia joyfully. 

Oh, for those who have asked… here it is. the only one of its kind…

“Bacon Matzo Ball Soup”

step 1: prepare bacon (about 3-6 peices, cuz it shrinks a lot) so it’s nice and crunchy. cut into small bits.

step 2: open a jar to Manishewitz Mazto Ball Soup (not to be confused with Manishewitz Matzo Balls in Broth). Pour into a bowl a half a cup of soup, and two matzo balls.

step 3: add bacon, heat up and enjoy. serves 1 kid but only when she’s very very very hungry.