Friday, February 1, 2013

To inhibit or not to inhibit.

Raquel has been good, bad, moody and excellent, roll the dice on the day.
All the indicators I thought I had no longer hold true for any length of time.

Yesterday we cut a giant blister on her foot that dropped a big puddle of fluid on our floor.  I was shocked at it's size as I haven't seen one that size since last spring.
It might have had to do with her jumping in the snow.

I'm proud to say she's hit a new milestone in agility - sort of..  I watched her in glee as we had her in the snow six days in a row playing to her hearts content.  She's finally figured out that she can jump simultaneously with both feet to get air then the hobbled one two step she used to do. She did it over and over till she was sure we all understood her new ability.  I cringed each and every bounce, but I couldn't bring myself to stop her.  I just held to an internal theory that the soft snow underfoot would lessen any friction at any point of her foot.  Clearly the theory was wrong.  Didn't help that we waited two days to do the change there after.

Once snipping the side and watching the three second pour to the floor, I pushed out the remnant fluid and traces of blood, Raquel flinched, shuddered and cried.  Blood stains quickly pushed through once the bandaging had been reapplied as she changed from pain to her typical pain in the neck personality.  Hardly showing that moments before I'd been hurting her.  Then she continued in good humour to finish her waking hours then sleeping through the night without hardly a blip.

I don't get it..  Again EB is a mystery.

On top of that she's had the most body blisters I've seen on her yet.  I'm sensing a point that I might have to wrap larger parts of her torso should this continue.

The hard part, is that while at home we're quite rambunctious with play and she carries that on without much fear in the less safer zones of her daily life.

As much as taking Raquel skiing in a backpack may seem a little edgy, going tubing down a run in Coco's lap was NOT!! going to happen.

To inhibit or not to inhibit?


  1. Hi Ryan,

    I check in on your blog just about daily to learn more about EB and to keep up with how your family continues to cope, live, and defeat this horrible disease. I actually keep up with several families who are facing the challenge of life with EB. I just wanted to tell you that although I would not dream of criticizing any of the other families and their methods of living with EB (I understand that each situation is unique) I would like to say that I so admire you and your commitment to Raquel's ongoing health. You are a wonderful father and both your daughters are lucky to have you. In my opinion you never make a misstep in your handling of the various crises that EB throws at you and your family. I know it is a disease that forces a person to second-guess virtually every decision, no matter how big or small (and with EB it seems that there are never "small" decisions needing to be made) but you are just spot-on all the time. Keep going with your gut instincts.

    Best wishes,
    Kath Young

    1. What can I say.
      This means a lot to me.
      We stress and try hoping its the best for our girl.