Sunday, December 5, 2010

Still don't know.

It's very bizarre that in daily contact with Raqu, Ren and I still have no idea how exactly the blisters appear.  A big scratch or a poorly constructed diaper/bandage change will do the trick for certain.
There are those other moments when we (me) slip into a comfort zone and forget what this child is all about and simply grab her around the chest and pick her up as I would have Coco.
A momentary lapse of brain function gets shocked to the present while looking face to face with her in a grasp seldom tried and mostly out of bounds.
Panic strikes and the question rings loud like the giant cathedral bells of Europe.
Have I just given her two giant hand prints all around her torso?
I'll lay her down on to her sheep skin bedding, take a moment, then shift into denial once it's clear she's not in discomfort till I talk to Ren next.  Then quietly say, not any different then the times she'll look over to me and quietly repeat the sentence.
"I think I just gave Raqu a big BLISTER."

Feeling each others pain we wait.
Wait till we do a diaper change or something else happens.
But depending on the firmness of grasp or if she'll be wearing two layers, nothing happens. Mostly she's carted around with her sheep skin bedding and a bamboo towel at her chest.  Always at least two layers between our hands and her skin.

Wednesday during her bath I almost figured out that wrapping the foam into her bandaging had it's first real flaw when left on during a bath. 
As the bandage soaked it gained weight, lost it's form then slipped off during the transfer from bath to table.  I was still cutting the pieces of mepilex and visopaste for the rewrap when I noticed her near bare foot being kicked by her other foot in one of her fussy "I don't want out of the bath" moments. 
We secured the foot (held her down) and then proceeded to bandage it quickly.  I didn't notice any immediate blisters or signs of trauma.  I figured we'd averted a minor disaster.  Although a few cross words left my mouth, mostly out of fear of what was to come.  Hopefully Raqu's nurses can see past those moments of panic and frustration.  I've seen them take it from Doctors on other occasions, but obviously this is a different situation.
It took till Friday when I fully realized the foam in bath was not going to happen again.  Haha, we'll see if I remember tomorrow (Monday) won't we?
The bandage again started to slip off, luckily we were ready for it and proceeded to unwrap the layers, only to find a giant blister had formed that covered her most of the area between her ankle and her toes down well into her instep.  It was a bubble of water that pushed out her skin like a balloon.  Where under all that dressing material such an amount of liquid can form I'll never know. The skin was thin and transparent, she fussed a little while I lanced it 10-15 times and slowly pushed the fluid out.  She had a minor meltdown when I added the saline solution, but all in all the situation was quite manageable.  The other foot has come so far where the skin is actually thickening, never mind those three toes that don't seem to want to grow.

Side note, I wonder now because of her toes that her ears are a little small, have they stopped growing too?  Good thing I know ears and nose are the few parts that never stop growing.

Today I felt inclined to wash the none blistered foot off in a rubbing manner.  Lighter, but similar to how I clean and hold her hands.  This was a first and rather gratifying.  The only rubbing motion to her feet so far have been to apply a large goop of Aquaphor before the zinc oxide paste.

Our friend asked today how we hold her or if we can?  We do, as stated above but layering of clothing is essential outside the controlled moments in the bath.

Ren finally stopped being sad about the naked belly time she'll never have. Although Ren did dig up a few other "will not ever get to dos" with Raqu this evening.
I can't help getting short with her in those moments.  It's just different with Raqu.  We'll just need more of an imagination with her. It pains me I can't be rough doing the gymnastics routine on the couch Coco and I often do (which 30% of the time have tears involved at one point - bonked head, crumpled shoulder etc.) go off jumps, mountain bike, ski etc..

OR the neck tickles that will send her into those spastic convulsions and giggles of her big sister..
It's all about the famous saying from the Dead Poets Society.
So far so good.  She smiles more then she cries and has good changes far more then the bad ones.

She has started to drool, hmmm next step teeth I guess.

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