Wednesday, September 25, 2013

Rome 2013

In my role as a director to Debra Canada I was part of the Canadian contingent participating in a yearly Debra Congress.  I have already made my way to two previous Congresses, but for the most part on my own accord and for reasons directly related to my role as a parent for a child with RDEB.  This time was quite different and the information I obtained strangely enough was more directed to my role as a Director of Debra Canada and as voice being able to guide our programs and research.

It is very difficult coming into a rare disease such as EB with so many complex issues that require large teams of medical specialists and that understanding the science behind it has been a steep upward climb with very little traction till this point.  It has been clear up until this congress that asking somewhat simple questions to those in the science field has lead to very little extra understanding.  Medical terminology coupled with a vocabulary that I've never been a part of leaves me often in silence with a glazed dumb look on my face.  Frustrated at an inability to comprehend what seems second nature to these people is very hard to accept.  I guess not so hard that I haven't had a medical dictionary open learning the communication skills to keep up.

This time however was slightly different.  I was able to befriend a Chief Scientific Officer of a drug development company whom was able to impart some building blocks for me to question and in a way have a valuable bullshit detector from what we are told and hear.  Data is king of sorts.  There were certainly moments that he too made me feel my incompetence, but once I exclaimed my glazed over eyes in the middle of one of his sentences in a self deprecating manner we seemed to have got on very well from that point and the more we talked the less I felt like the kid sitting on the bench while everyone else played the 'GAME'.

The talk of a cure and beneficial treatments are shot at us in every congress.  Yet, the reality of these treatments impacting my daughter's life are few and far between.  We must rely on the Best Practice Guides to be sure our medical professionals understand the nature of the disease in terms of it's life curve.

It certainly helps that I'm certain the more I learn and the more I see we've made many of the correct calls in Raqu's care.  I'm also very cognizant that much of what we do still needs to be questioned and reassessed so that complacency won't one day find us a corner.

As far as Debra goes in a very clear manner I've been able to narrow down a plethora of issues and ideas to a couple that I think are attainable as a small member organization. 

It's a wonderful feeling coming away with an empowerment by understanding what I know and what I need to know and the proper paths through it in areas that I can with Raqu and a few others to control and likely make a difference for the future.

At the outset of this trip there was a bit of an internal ethical battle of taking a valuable spot at this Congress that Debra Canada can somewhat afford, but I'm now confident I made the right decision to go and will be able to soon add benefit to our national chapter if not the rest.

By the way.  Rome is something special.  Other than Ren and my two girls I don't think I've ever fallen in love so quickly.

Tuesday, September 10, 2013

No drugs. No problem.

It's been a big battle keeping Raquel comfortable through her all the ordeals she's up against yet we seem to be pushing through a new milestone of sorts.

No Drugs Required.
No not really, she still gets something for that damned itch.

A little child of age 3 with skin so fragile a nick with a finger nail peels off skin filling your nail as if it were butter saying 'No' you aren't doing it right, 'use your nails'.
She say this during a struggle to keep her heel from hammering the top of her opposite foot in every attempt to kill the itch.

This killing would more accurately be described as breaking down the last months healing.  Soon to follow the limp, then the ugly scream fest of a dressing change, then the anger at me for cutting blisters and manipulating her feet and then return to the itch.

I'm not sure who, of us two has more issues with loss of control on her bandaging?

As I so desperately want to dig and remove every last scrap of sloughed skin and her so dead against me even looking.  For her I'm able to apply a big goopy layer of aquafor, but not take a moment to look, inspect, ponder and touch in any way that is not directly related to me putting the bandages right back on.

Some days of late have ended in a stand off, I've been able to do the bare minimum and she's stopped me from digging and the discomfort it creates.
Unfortunately it's the battle for her digits that I'm not in any way interested in losing.
Yet her toes are going going.....

No Drugs Required, right I was on track from something.  Got side tracked.

It's been a small grade down to today where she's had none.  We've done this before and I've regretted it, but she wasn't like she is now.  She has an awareness that I don't think I saw in her before and the start of her ability to push through pain and go for it what ever it is.

We walked out to a beach near here.
There are two dykes built up.
One to contain and push Vancouver's sewage way out into the ocean and the other to contain the great Frazer River's north arm.  The one that's the poop shoot is paved and has a parking lot full of people wandering it's high thin banks to it's terminus and back with the constant deep thuderous roar of jets making their way across the planet.  The other has a gate not stroller friendly, nor a path stroller friendly or a few hundred meters of river and ocean debris of piled boats and logs very view friendly, but once one breaks through, it's sand and stunning beauty.

After a KM or so pulling a stroller backward through soft sand with a lump of sleeping child we came to an area open and interesting enough that I could fish and the kids could play and Ren could, well not be concerned or irritated I was fishing.
Once the turkey woke it was everything 1 year ago we'd be losing our minds over.  Raquel playing in the sand making castles and so effective was she that her older sister had to join in.  In any event she was determined to climb on logs and balance 3' up from certain EB nightmares and she had a blast.  She didn't care her knees were crusty and raw or her feet either.  Only that she was part of the gang and making all of it.
Her typical investigative squat.  We're always on her not to kneel.

The castle before Coco discovered it.

haha you mac people won't be able to see this video.  Too bad, so sad.

My usual ten finger salute.  'get lost dad'