Friday, August 7, 2015

Keeping on.

It's  been very good for a long while.

Yes, the typical blisters at feet, knees and elbows are weekly.  The monthly corneal abrasion sneaks up and shuts things down for a day or two.  Had a few big mouth blisters that haven't been seen since the early days.  But all in all Raquel has been extremely resilient to her EB suffering and her basic pain threshold is something to be in awe of.

The only big procedure has been a dilatation in June.  I sensed her esophagus was getting closed off, but because she eats almost no foods through her mouth it was difficult to tell the scope.  It turned out her opening was reduced to the same size as the first time we had the procedure.  I'm still amazed that after the few months preceding her first dilatation we were up nightly wondering if this would be her last.  As some of the choking sessions became extremely dire.  In this time around I think we had maybe two to four nights that were of any concern.  Never mind the days and weeks of minor choking episodes and spitting out her saliva for up to a week because she couldn't swallow, just not the prolonged choking and breathing issues of the last time.  I'm guessing this is mostly due to her being a pro at EB and not letting it get in the way of much.

I'm fairly certain because we've established stringent parameters to her play and daily interactions with kids, toys, adults, nurses we are where we are.  She wears bandages at hands and feet daily, knee pads and silks under her regular clothing with a blanket close behind for chairs, ground, travel and so far one of the main reasons she has been able to flourish.  I do have many nervous moments as she has only developed one pace.  Running!  Her style of it anyway and is jogging anytime she gets out of the house.

Ren and Coco have been away for the greater part of the summer and Raquel & I - Babi and the nurses have been the team in charge.

It has been amazing to have much of this one on one time as Raquel has finally come around to thinking that after all the pain and suffering that her daddy puts her through, he is still a good guy and maybe - that she loves him!  I honestly wasn't sure this would ever come.  Raquel has reverted a bit since Ren has returned from Europe to say a sad goodbye to her mother.
One of the few kisses I get from her that wasn't at the end of some intense bargaining.

Raquel and I have had a few amazing trips this summer without Ren and Coco, included are two camping trips for two days and a night each in a tent.  Both were managed extremely well.  The first, a trip by ferry and bicycle to an island camp site near here.  The second a sailing trip in a small 19' sail boat deep into our local fiord and camping at an old mill site with her cousin, uncle and aunt.

Raquel in her typical jog trying to track down her cousin

Raquel and super nurse Louise at Saltspring Island

Raquel and cousin loving the sailing

Home for a few nights.

Sealynn Bowl moments before we flipped the Chariot

I guess one of the not so great moments was entirely to do with me and taking her into the skateboard bowl in the chariot and after about 10 laps snaking back and forth I finally flipped it with her inside on my final exit from the bowl.  I got away with a small blister to her thigh and another to shoulder.  Man she was pissed at me.  She's become very expressive with a decent descriptive vocabulary.  Enough that she knows how to scold her dad for being a dummy then tell everyone in detail how I managed to crash her buggy.

Canoeing, well being blown into shore.  She carried that paddle around for two weeks before her wounds healed enough for me to allow her into the lake and go up and down beach in that boat.

Her hands are our greatest achievement in her care so far.  Her feet another matter and getting closer and closer by the wound from losing her toes.  MEh..  As one can see, we keep them covered wrapped and cared for to the ninth degree in hopes someone figures out how to get her some collagen and those hands can one day pick any and everything she wants without barriers and her daddies restrictions.


  1. So happy to see this update! Raquel has changed so much since the last photo...she is looking like her daddy :)

  2. Great to see you back! I have missed reading your updates!