Tuesday, January 17, 2012

Almost breaking the cycle

If it weren't for Raquel's hints of a fever or flu.
She's thrown up her food a few times in recent days and has been a super heater.
Actually most of her full feeds come back up.  The best part is when we see the streaks of blood mixed in.
No, the best part is the nights.  Which have been horrendous,  Raquel has been clinical with almost an hourly precision of waking, crying, flopping and twitching.
How nice it would be to have only one or two symptoms.
Blood in mucus + fever.
Or large open area on one foot + sore throat.
Maybe even pain in belly + with a high temperature.
Drugs are our friends at this point.
Falling so far in such a short time.

It was fun when Ren was gone.  I slept through the night, had lots of space to stretch out.  Now it's sharing couch with baby till Ren finishes her first work week in a year and a half.

Feels like I haven't really worked in a year and a half either actually.

I think last night I only spent 3 hrs in my bed.  Glad our couch is extreamly comfortable for nearly every slouching position.

Raquel's blisters are still coming fast and furious.  New ones of various sizes pop up regularly.
Three more on the exterior not sure what's making her vomit streaked in rouge though.

I only wish that when I remove the outer layers from her dressings -
A  it doesn't smell like a brewery / fermenting flesh
&
B  I don't feel like I've found an ancient Egyptian mummy and am removing odd and discoloured wraps that look centuries old, if it weren't for A.


Her knees have looked like this for months and months.
I was hoping they'd look better once she started walking.
Maybe not just yet.



Despite it all she still looks rather stoic.



I had a message from Casey's mom Beth today with like images of painful looking feet and other stories of EB horror.  She mentioned we should sing a little EB chorus of disdain.

I'll do a take on the Canadian chorus so often heard in hockey rinks.

EB you SUCK!!
EB you SUCK!!

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