Thursday, October 13, 2011

EB awareness week is around the corner

It's settled.
I'm going to see and learn what I can for the Debra International Conference in Groningen Netherlands during the EB awareness week.
Renata pushed me so much that I had to go.  Plus I had been hoping to meet with the family on the East Coast who have helped us out in a few urgent phone calls and many emails.  As they have helped us get over the hump in deciding to go ahead and have the G-Tube inserted.

At first I wasn't sure what to expect from the conference.  I read the line up, but maybe wasn't able to concentrate enough to see what was likely in our interest.  Better put, interesting enough to go all the way to Europe and of course be away from Raquel & family and  for a week.  
I'm certain now the trip will be well worth it.  It took a few emails shot off across the globe to realize in many cases travel will be the only way to meet many of these people and for the man who's kept Raquel fully clothed in Italian Silks, an in person thank you. 
My German buddy better return my email!!  As it'd be great to see him for a night or two.  I can promise his wife it won't be the same trip as we did at age 16.

I talked about isolation before.
It's a desolate landscape when you only know of four other people suffering with the severe forms of EB within the Lower Mainland.  And when many of the nurses and doctors we meet give long blank stares as we describe what they can or cannot do when treating or inspecting Raquel.
I'm starting to realize the importance of such conferences.
Especially in how much I've taken off the net from Debra, EB Nurse and other sites to help with Raquel's care.

Anyone reading this will know what EB is about and probably too much info on our little family. Maybe you've told others about this girl, Raquel, whom goes through a daily battle often full of pain and discomfort.  There are many others scattered across the globe and often living in much worse situations. 
This is the fund drive for Debra to get out information and help sponsor more research.
If you can find their sites for your country, please donate.
There's as many causes as the world has issues, hopefully this year many of you will think of dEBra.


Her fall last night into her drawing easel, (need some grippy socks that aren't too hot)
 As bad as those marks look.  She was a nut today.  Goofing about all day till dressing change time.  We had to call into action a new helper.  She did fine.  Raquel only protested and twitched during the popping and rewrapping of a new blister across the whole top of her left foot.  Experiment in wrapping wasn't so good I guess.  I know her husband, one of my main fishing partners would have  passed out and been more of a problem then help at the sight of the blood soaked sheets. Maybe she was close too, as I noticed her eyes were doing their best to keep looking in other directions as I was snipping at the edges of her blister with my special scissors our plastic surgeon gave me.  I'm glad the change wasn't as frantic as Monday and the Friday before.  Ren and I could have done today together, but when Raquel disintegrates, so do Ren and I.  Very helpful to have people say yes so Ren and I don't have to test our vows.
Although, I don't remember the part .till death do we part. before I said 'I do'.  Or 'ano' (Czech)
Maybe that was why I agreed to get married in Czech.   I wouldn't understand much, and maybe not accountable, haha.

No, not true.
Her Grandfather did a wonderful job for us and much was spoken in English.
But still I don't think we're bound till death.  What a relief.  haha.
My ears are burning, I can already see and hear what Gabi will say to me poking fun at Renata again.
I miss having Gabi scold me, it was almost a daily exercise while she was visiting from Czech.  It's just not the same now..
woops.  I should delete that, probably not a good idea for her to know how great I think she is, err or how much of a pain in the ass she was.

This is the smile and peering eyes we've had since yesterday

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