Thursday, October 6, 2011

Healing Under Derma Silks

I understand that infection is such a big deal with children with EB.
We've been very lucky so far that we've maybe used bactroban 6 or 7 times in the last year, on Raquel's foot and the fungal cream at her bottom twice.
I was recently checking out Debra Canada's web site and read about a boy who died of septic shock at a very young age.
I felt a heavy heart reading about it and am very uneasy that such a demise is such a real possibility for Raquel.  Among other things...
There is this new found sense of community I feel to those who have EB themselves or within the family unit, where their plight and good times affect me more and more.
It's a new feeling for me as I often read of wars and social unrest the world over to almost junkie status.  There are so many ways for life to be complicated and there are unfortunately enough people imposing their will that there are rivers of despair everywhere.   Anyway it usually culminates in a few cross words in front of the computer screen.  If my irritation pushes on past that to the point I have to bring it up in conversation with a friend or whom ever will listen, it's often met with blank stares.  The isolation of prosperity, I guess.
EB is an obscure disease wrought with the feelings of isolation, it has wicked consequences and the deeper we go with Raquel's age the potential issues pile up.  By seeing the older families and even the new ones dealing with it, it's getting tougher to sit idle and swear at my computer.

OH how the mind wanders.
To delete or not to delete?
I promised a friend I wouldn't, but I'm not sure that applies to this BLOG.
Oh well.
October 6th

September 26th
Back to bandages and her silks.
We've not put one bandage or wrap on this area.  It oozed for a couple days and we were (Renata was) diligent in keeping clean silks on and the wound has been in the above state for a few days now.  With Raquel a blister of this nature that gets good air circulation will heal to a sealed state (last night I actually read what it's called but like with other descriptive medical terms - a sonic boom is heard as it passes over my head).
I'd better get a useful grasp on these terms as I'm planning a trip East to the Netherlands for the Debra International Conference.  I've already been called out on my comment the other day of me being the 'normal gene carrier' and Renata the clear 'recessive carrier', and not explaining that I likely have clusters of the recessive gene that we're not found in my sample tested.  It was too much fun to poke at Ren for me not being the father then to actually be factual.
How the Recessive Gene is transferred
Thanks Gena!
The Conference does not have the line up of issues directly facing us, or issues that I spend a lot of time thinking about.  I also wonder if much of the information can't be found out on line or by asking the few EB families I keep in contact with.  I'm thinking the people I may meet in person will be the invaluable part.  Just hope Ren, Cord and Raqu can handle a week without the man who turns the household upside down on a regular basis?

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