Thursday, November 10, 2011

Living in the Moment

Clearly living in the moment has served me well in the last year.
No more evident is that right now.  Renata and I were talking last night that we feel completely normalized right now.  Raquel has been advancing in leaps and bounds as far as cognitive and social interaction goes.  She's a nut and tears around our place with ease.  She climbs over all obstacles pulls all our books off shelves with in ankle heights etc etc.  There are no limits in relative EB terms at the moment for her and how we've become accustom to living.
We've currently had no serious issues for a long while.  I've been waiting for a big ugly blister on a body part under the silks to document but there have been none - of course the tops of her feet are usually a flaky scab layered mess mixed with blood and balloon like skin shapes but
What Ever!
Thus is the next while till we get her properly fitted with shoes and maybe slightly adjust her foot dressings.

On top of all this we've been getting outstanding support from friends and companies around us.
Not only are the DermaSilk companies at the very top in Italy and our local distributors through Western Allergy been more then generous with keeping Raquel comfortable, we've had friends pitch in at levels far outside the norm for friend and family intervention.

I mean it just doesn't stop.  I figured we'd get in a few months and people would lose interest.
Andrew and Dammit Janet did exceptional jobs in providing dressing change help while I was away.  Of course I complained to them that subtle changes could be done in what they were doing, but in the end all was well (I'm like that annoying coach - loud, aggressive and expecting a perfection I can't even obtain).  Then a gang of Renata's friends sending gifts and the group from Western Allergy pitching in.  When you look at the bills we've yet to pay, it's easy to become a little taken back by the gesture.
There are also the dinners that keep coming from Cap Church.  The cream on that is we often have left overs and lunches for the week are generally covered.  Our fridge looks bare and for the duration of this dinner run we don't care.
It's easy when you have help.

So yes.  This is a high.  This is a moment of time I'm cherishing to the ninth degree.
Oh and Raquel slept through the night, too bad I had to listen to Renata blow her nose every 20 minutes - all night long then Cordelia wanting to jump into our bed at 5 am.
What Ever.






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