Wednesday, May 8, 2013

Fluttering by

It's odd losing track of where your mind and body are at.
When asked about how are the girls - particularly Raquel I say excellent.

Yes it is excellent when I compare all the horrors EB brings, but it isn't excellent at all.
It's a horrible, mutilating, debilitating disease, but of course you all know that.

My state as caregiver to Raquel has been even keel for most of the time and dark moments of 'EB sucks' sweep by once and a while with a side of 'why me?' and a sprinkling of a deep inner suffering.

It's cool when I ask the redundant question of Cordelia, Ren and Raquel 'who wants to come fishing or sailing with me?', and it's always Raquel that jumps up excited and says 'yes meeee!!!!!'

The crappy part is I need the other two along so that things to go aryan.  (no not spelling mistake, I think awry was a word long waiting for me to enhance it's meaning).

My EB story of day.
We were doing the dressing change today and while I miss placed her main blanket for her stool used to place under her bottom and behind her back to keep her skin smearing off from the wood seat during any struggle or movement during the procedure, I tried a different blanket.  Except it bunched and pushed her awkwardly out from the back rest.  I didn't realize that the wood shelf that is her seat was also pulled out and dangerously at edge. 

In a quick short sighted blunder I pulled the blanket with Raquel to reposition her and the seat just slipped out of it's hold and collapsed with her stuck to it and went straight down two feet.  Doing exactly what I was trying to protect, she or I smeared a 3" path of skin off her back from the top of her diaper to the middle of her shoulder blades.

Bad Daddy.

Probably the largest path of skin removed from her body at any one time ever........
I've since done my best to avoid her as I have to deal with the blood and oozing fluids down her back and clothing.  Gladly these are the days the nurse is best suited to take over and remove Ren and I from the steady suffering that EB is.





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