Thursday, November 25, 2010


     We had a Physiotherapist in to see Raqu yesterday as her hands are basically bound 24/7, from about day four or five.  Typically we spend a little time stretching and playing with her hands during the dressing changes.  I don't think it's enough as we've already noticed a little finger drift.  The splits are helping a bit and her hands are flawless without sores.  The issue is if she's  fussy during the Visco paste layer it's tough to get her fingers where they should be within hand splint.
It can get a little chaotic as I demand Ren to give her the bottle during her these moments.  Sometimes it works, other times there's milk everywhere and the resulting skewed wrap.

Ren and I have a steady battle over the use of a soother.  I say NO> She says we should look at it as an option.
Well, for a kid that gets blisters from even the lubricated mouthful of milk, putting an semi sticky object in there where her instinct is to suck it dry would be pure carnage in my estimation.  Followed, quite possibly by a repeat 22hr freak session by all.  Except for maybe Coco, she seems well insulated to our plight in almost every aspect.  She's actually the true pillar of strength in this family, hugs as a true lightness of being given at random.
I was very proud of Ren last night as she did her first needle to blister in mouth routine without my help.
While our nurse was looking out for Raquel, Renata was able to do some grocery shopping (Coco and I were again off skiing trying not to miss any jump on either side of the run).  When Ren came home Raqu was in a fit of pain and screams.  Inconsolable.
Ren noticed a blister on her lower gum, the two of them with the help of some reinforcement (our neighbour across the street) held her down and lanced the blister.  Within moments she was quiet and feeding.  From what the house was like when I arrived home an hour or so later, there was no waterworks, no shortness of breath, just a really proud MOM and content baby.

We are also looking at getting ahead of her eventual rolling over and crawling.  Our first daughter started crawling at 7 months and rolling at 5 months.  Raqu rolled over again today.  I keep thinking when she does it is going to be full time.  Luckily this is not the case.  Knee pads.  Elbow pads.  Special padded socks.
I've yet to sew into a pair of Coco's socks some foam.
It adds a half hour to the change, cutting special little pieces and wrapping them into the conform bandage for both her hands and feet.
Efficiency Rye!!  You'd think I'd take the 2 hours one evening to make up a few.  In just over a week we'd be earning extra time for hand calisthenics.

Then there is this wonderful round of support that keeps popping up.  Our good friends The Nels sent out a note to many of their extended community suggesting help for a family in need.  I went through the email list and only recognize two names, which makes it all that much more amazing. The result, dinners on dressing changes till sometime in January.  WOW!
Eating late isn't an issue for Ren and I since Raqu is on the EBM, but feeding Coco late has been the issue with the dressing change evenings.  I hear stories of children of Coco's age getting to bed at 7.  I can't imagine.  I'll not say when we get around to feed her on those days let alone put her to sleep.  Could be why some of her grades seem a little lower then I'd expect.  Should be that better planning is in order on our part.  These dinners do the trick now for certain.  We've had two dinners and they were wonderful!!
Lots of left overs for today too.  So really THANK YOU ALL!

I could get philosophic here and on to my run on sentences and ideas, so to be brief cause I gotta work - when you do your best for the people you love and respect, the people you love and respect will surprise you back.

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