Tuesday, September 4, 2012

Just a little EB and a whole lot of support

We were off to a friends this last weekend for a special birthday party.
Special in the way that when a party is undertaken with a band and lots of friends the center of attention puts her desires forward to support EB and Raquel by having a $25+ entrance fee (of sorts).
At the end of a georgeous late summer evening there was a big bowl full of cash and cheques equaling $1685.00.
So, when anyone asks, what can I do?
Well,
take our great friends lead when you hold a little social of various magnitudes.
Any and every thing helps.

Believe me, that money is going to help someone with EB who is left out from various funding shortfalls in our countries governments and municipalities.

It was an amazing party.  I feel so grateful that Raquel and our family has been able to have so many incredible friends to lend their various levels of support.  It really makes getting from one point to the next that much easier.

As far as Raquel is going, she's been great.  She did skin both knees yesterday and woke up at 5 with some discomfort or itch at her feet from wounds getting better, but really totally minor.

The vast areas of her body are perfect soft baby skin we tickle and kiss as much as possible and we certainly don't take it for granted.

Her mood and mobility are virtually unhindered.  She watches older children play and wants nothing but to jump off stairs and rock walls towering well beyond her head.  She basically only knows two speeds when trudging around.  Walk or run. 
I still can't figure out how she does it as I know how raw her feet are on most days. 
She's the true model of grin and bear it.

She Rocks

Merissa rocks!!!

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