Sunday, March 4, 2012

EB Blues

Couldn't actually pin what it was or why it was.
Maybe it was just a little low in the battle front.
Maybe it was spawn out of a moment where while poking a blister Raquel flinched and kicked plunging a needle right through her skin to be stopped by bone.


She only stopped fussing for the second to look me in the eye and give a small instantaneous look of shock and wonder.  I was then reminded by the nurse that hitting bone doesn't actually hurt. 

Hurt who, is the question?  I had a nauseous moment but, damn kid for not staying still!!!!!

Maybe the blue was getting a link from the company Polymem.
One of their products used in wound care similar to a Mepitel.  Foam stick bandage - the tacky stick EB friendly, unlike the tape used on Raquel's belly day 1 that left the square pattern.

This is the imagery I looked over.

We fight with little wounds I understand.  At least from what they could be.
Saying we've lost the skin on the entire upper of her foot is one thing.  The poor girl who had those incredible sores on her back.  I still feel somewhat isolated from the horrors that will come.
I often talk frankly about the eventuality of her hands becoming blocks, even the guarded expectations of life our Pediatrician so elegantly put it in the TV interview but living beyond this wonderful time with Raquel is such a black out.

Maybe I used up my fighting spirit for the next couple weeks during the interview while so eagerly talking about the horror that was her birth.

This evening while she was settling down for sleep on my lap she grabbed my phone.
Turned it on with the bottom button.
Pushed her thumb across the unlock screen - unlocking the phone.
Then pushed the message button and proceeded to make a nearly legible word then pushed send.

All the while doing her best to hold me off with her elbows and shoulder position.
So far so good.
What's to be blue about?


  1. each day is a words..just a hug for you and your family..have a lovely Sunday!

  2. EB blues- gotta love them, cause just when you think that they will ruin your day. The EB personality takes over.....and can always make your day so much better! Keep seeing the amazing girl inside.