Sunday, April 17, 2011

Mommy gone and we're doing great.

Grandma has been a great help.
I don't feel too guilty about it as Ren gets that help too.
Coco and Raqu have been a dream today.  Funny, I always have an excuse to disappear.
Work.
Play.
Something that won't happen again for a year, usually to do with snow or salmon runs.
Renata always lets me go.
She's super woman for certain.
This weekend she's out for her first real crack at a full nights sleep.
How is this possible?
If I don't have a decent sleep at least once a week I'm a wreck.
Ren is going on 9 months...
I should have gone to sleep hours ago, but now I mind as well wait for Raquel's 1am med and feeding time, there are odd rustles from her direction so it's approaching.
She's like clock work usually with her dosing.  Except, today.  She doesn't really seem to need it and has pushed over by an hour twice.  Hmm I'd like to get that back to 4 times a day, not the present 6.  She's been a really happy kid, less the usual thrash 10 minutes before she falls asleep.
Her face has healed up very nicely and the little pockets of milia are almost the only evidence of her disease while clothed.
Her lips are blistered and raw, but that's the look of any kid coming out of the desert.
Her body at the moment has only a couple dime sized spots on her elbows from her dressing change bath then the usual knicks from our finger nails while changing her diaper.
She's a super star.  And this good run is welcomed.  Saves lots of energy for when we need it.

Funny that the most stressful part would likely put a normal family through a loop.

We've noticed a funny tightening of her skin on her palm.
It's strange because I thought the strictures (? not sure technical word for it) on Recessive Dystrophic only happened when the skin has been blistered and the scaring is to blame.  We have a call in to meet her Plastic Surgeon on Tuesday to do some problem solving.
The many splints I've made work in many ways at preventing this and that, but now this.  Her fingers aren't drifting like they were anymore, but it won't take long to create a claw if her skin at her palm tightens up and heals together like it looks like it's heading with this new discovery.
I'm glad when Renata phoned the Surgeons office we could have had a meeting within hours.
Seems Raquel gets the VIP treatment.
I'm finding some of the medical things very interesting, problem is, with basic Raqu care, Work, Family and Fun getting a deep grasp on some of these issues is mind numbing.

Ren is lucky I haven't let her get an phone, or else I'd be invading her sleep just now.
Peaceful sleep in Victoria.
I'm actually surprised how cool and quiet it seems sans Mommy.
I haven't heard really a peep in four hours.
haha, it's almost never like then when Ren is here.

hahaha

video

1 comment:

  1. Hi guys..just checking in..hopefully you are enjoying a peaceful time..I love to read about your family...Exercise the hand..lotion it up to keep it from getting dry and tight and move it around..stretch it..rub it..do some exercise with it..lean it flat on the floor (like in a crawling position) to stretch it out. and encourage her to open and close the hand..curl the fingers against her palm and open them a couple of times while singing some songs.. stretching it if it is tight skin will help..sometimes the palm can get tight if there are injuries to the wrist or fingers..It doesn't have to actually be the palm itself hurt.. Keep smiling and hugs to you guys....

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