Saturday, March 5, 2011

Another day in paradise.

The day started in good spirits.
But by the end Raquel was covered by blisters.
For those with EB or have lived with it for a while, it must seem strange to think back to the early days and the panic over every little blister.  Some are of little significance, true, but some look so painful and uncomfortable that it's hard to not feel her pain or often envision it even if she doesn't seem to notice.
I had the splints on her hands and they always seem to make a mess. 
Good hands for when there is a cure, or bad hands and having them somewhat useful? Vaguely paraphrased from a new friend of ours whom also has a son with EB. 
We have the big chair Simona brought.  Raquel loves it!  But she bangs and beats her hands against the tray in excitement for nearly everything that happens around her.  The first couple days, nothing happened to her arms from this action, but now she's started to pile on the red open sores on her arms and elbow.  A place previously almost unblemished.
I feel like taking my jig saw and chopping out a good deal of the plastic from the leading edge of the tray and glue some foam on it for protection, but I fear I'll probably destroy it in the process.
Maybe I should just pay Simona for it now and chop it tomorrow. 
Raquel also has a giant loose waterskinbag that goes from her collar bone down and around to half way up her shoulder on her back.  The worst place I figure to have blisters less the mouth area for her right now.  Renata finally admitted to it by thinking back to where it likely happened. 
Raquel on her side in an awkward position, freaking out because she was pinned by what ever.  Renata reaches down to pull her up and there it is a 6" blister.
As disturbing as it sounds, she's been a dream since.  The dressing change wasn't so bad either.  Although I think she's starting to figure out it's a time she probably doesn't want to be on the table, as the fuss and fights have been escalating over the last week or so.  Joy.  What's another month of awareness going to do?  She'll start the fuss as soon as she sees the nurses or me open the big white door with all her supplies.
I know this fuss isn't pain because of the early days, plus there is a certain pitch to her cries that can bite deep into my being when it's pain.  Problem now is she would rather hang out in her various chairs and watch her goofy sister do her goofy best, who wouldn't?
The High today for me unfortunately didn't come by route of Raquel.  It was her big sister.  At bed time I was told to go into Cordelia's room for a surprise.  Was it ever.  Cordelia read me a book.  For the first time. 
I often pretend not to know the words to some Czech songs she likes to sing before bed, so that I can have her sing them to me instead of the other way around when Renata puts her to bed.  Maybe I'll have to pretend not to read for a few weeks and sneak a few more of the cutest bed time stories ever. 
Discovering her hands, yes I know the drift looks bad on the center finger!
Raquel now does a few signs.  She's very intent to what we are doing and is getting good at mimicking our movements.  Yesterday Renata was trying different things from waving her hand goodbye and hello, then clapping etc., then the hand quickly oscillating to her mouth making the ohh ohh ohh ohh ohh war cry sound. When Raquel's over sized hand with hard plastic splint and three layers of foam went up to her face repeatedly bonking her nose in somewhat of a spastic reflection of Renata, Renata quickly realized her brain cramp and that was probably a sign we'll not attempt again.

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