Wednesday, November 28, 2012

Back to Earth


Raquel has finally come back to earth, but not before some constipation.
She's had her second and third solid poops in two years and the only place I've never seen blood emerge from her body has now been checked from the list.  I don't think it's serious, but just shocking.  It's like her hands, eyes and throat.  It's one of the four major places I do not want to see or know there are any blisters and scaring for the apparent RDEB debilitating side effects.  So much so that I've based her care philosophies at avoiding them at virtually all costs.

We went to see our Ophthalmologist yesterday at Children's.  Before hand I threw out a pile of emails to Doctors and fellow Debra Board members for the presentation slides from the International Congress.  They haven't been compiled into a web version as our President and other board members are all volunteers and the time it takes to undertake is rather consuming.
Next to the wound speech by a Colorado Dr. the eye presentation was by far the most interesting and informative.  So it was very relieving I was able to have much of it's contents in hand with my notes taken during the Congress to ask questions for the present and be ready for the future.  Of course there are many avenues to an end.  It's just very important from my view to be aware and not purely be pushed by the flow.  Direct it where necessary and feasible, but if pushed - swim.


I have to thank everyone who helped get this information so quickly.  Amazing!!!

On a side note.
Things have settled that I've been able to enjoy a little hike or two.
It just sucks that we live so far north and darkness comes so fast in winter and the only option before the snow comes in earnest is to hike in pitch black in the forest with all the spooky sounds and critters jumping from tree to tree.

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