Wednesday, April 11, 2012

Been a while since the feet have been bad

Raquel has been having some harder times of late.
Her personality has still been goofy and her temperamental outbursts have been considerably less.  I only say this as I feel less irritated by when she does have one at the moment.
Although she still does break down in full fledged fits if something isn't going her way.

Problem is she watches Cordelia or other children do things, then tries her self and gets grabbed, held and the big NO.  I've read this topic in many other EB blog sites.  Poor kids watching from the side lines.

The biggest concern continues to be Raquel's esophagus.  She nearly choked when she nibbled a banana the other day.  Then there was the chocolate egg she found and chewed on with foil still attached.  Damn Easter Bunny!!
That creature is getting eaten next year no doubt.  No more Mr. Niceguy.
I'm going to lay some leg hold traps all around the house and stuff him with help of a taxidermist I know.
Anyway, it's the little end of a piece of anything and that's likely all it's going to take having watched her spend considerable time trying to push what ever it was back out the top.

We've been waiting some time now and all we'll get is a preview to see a Dr.
I threatened part of our team whom really didn't deserve the comment that I'd bring her into ER or the (did I already mention this in the blog??)
- memory fading - or the office of our GI guy and feed her something and watch how quickly they admit us.

It's strange.
The G-tube was so fast.
This, which is actually life threatening this day or the next has been pushed off.  It's frankly our first experience with the medical system where we haven't had preferential treatment.
hmmm maybe that's it.  I'm just pissed because we're like everyone else with a chronic issues.


I don't get it.
I guess I have to be a squeakier wheel.

She has two rather large holes on each of her feet now as well.  Lots of blood from one today and it was very difficult getting her to hold still while I used my special scissors to cut little whisks of flesh from the bottom edges of the blister.  One of these days like way back when I'd sink the needle into her tongue or gum when lancing the long ago mouth blister, now I'll actually clip off some real flesh instead of that ultra thin sagging bag of fluid.
It's been so long that she's had feet problems considering how much she walks.  Her first foot to blister is healing very well.  So hopefully this won't last long.
Her recent rapid growth I think has moved her feet onto the next size.  Too bad we don't have a shoe like that soft leather pair, I just have to remember to remind everyone that maybe the extra sock we use for her walking around the house doesn't need to go into the shoe too.  It once helped to fill the shoe, but obviously now is a hindrance.

photo Jenny Nelson

Photo Jenny Nelson / Dirty White Planter Ryan Hultman

photo Jenny Nelson

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