Saturday, September 17, 2011

I can't remember what life for Raquel was like when she didn't have a GTube?

I can hardly imagine anymore.
Would it have been about being woken at all hours nearly on the hour for a year?
Would it have been about mouth blisters being popped nearly every day.
Would it have been about living in total fear that the entire inside of her mouth could fall away once again without warning and worse while anyone else in the world other then me was holding her?  (Of course that statement has a whole lot to do with the over protective side of me).
It was.
It was about a lot of pain and suffering by Ren and I and whom ever else was close by.
Raquel keeps getting better in spirit and the lapses of trauma are getting further and further apart and lasting no where as long.
Yes, I popped a blister in her mouth this morning.  It was noticed while getting her into her car seat for the Saturday's excursion.
The blister was big and black and dripping off the front edge of her tongue and needed immediate attention.  Seeing she was fairly immobilized in the car seat, I yelled to Ren to bring a glove, aquafor, a needle and an spent syringe for the extension of the needle as she was locking up the house.   Raquel quickly realized what was going down and started to close her mouth and twist away.  Her big eyes looking down and watched as I pulled the blue plastic sheath from the needle and then put my left index finger in her mouth holding her lower jaw down and mouth open.
By this point she's not interested in looking, just getting away away.
I slid the needle in at a perpendicular angle to her tongue piercing the thin layer of ballooning skin, then with a little twist on the retrieve to tear a slightly larger hole so that the tiny hole won't seal.
Over & done
Raquel was back to making silly faces at her sister sitting beside her within seconds.
For the rest of the day including 6 hrs on the road and in the little sea side community of Steveston, Raquel only spoke out in frustration when she was hungry.  She contently sat through brunch and a walk along the river.
We brought out the G-tube and fed her in the restaurant and in the car on the way home, even stopping mid way for an afternoon espresso. 
She was a star.
Funny, the conversation started by her pump and tubes leaving the small table and disappearing under her shirt toward her belly.
'Is that her breast pump'? was the question.
I didn't laugh then, I was too stunned by the question.
When things are going well, I often feel like giving the questioner a scare and giving the real hard facts of EB quickly.  Honestly sometimes it's best, as I hate the question, 'will it improve over time?'  Best to nip that one early on.  I already feel sad by that, I don't have to see someone feel sad for her and us too.
It's the sh*&s.  We're getting by and even starting to see a ray of light. 

I can only think it's the nutrition that keeps her so happy.  She's plumper and her colour between the scabs, sores, scars and milia is very good.
The gorgeous Spanish Alabaster I once carved while living in Paris.  Oh the romantic past life I once had.
What a twisted life.
When I say or type how good she is, the exact moment I finish the word Alabaster (just then) I hear a little cry.
Listen hard,
Cry gets LOUDER!!
No need to listen anymore, time to make it down the hall and avoid any damage she might do  by picking her up and wedging something between her legs and keeping her hands from her eyes.
45 minutes of crying rubbing feet and squirming later.
I guess that's an acceptable outburst should that be the end of it for the remainder of the night.
Our life is a little ball of Ying and Yang rolling down the road.
light dark light dark light dark.
At least it's paved with the G-Tube and rolling right along.
Before it was spinning in mud or banging on boulders, going no where fast.
Looking often to the clouds for a sense of peace.  As moody as they may be here in Vancouver.

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