Friday, September 5, 2014

Summer time rolling

It's easy to tell when things are going very well for us.
Raquel has been so good and we've not had any kind of health concern outside the regular blistering that is and will always be her life.  Feet, face, knees, elbows, and the odd finger and arm print on her torso from a miss placed poorly timed interaction with a wiggly hell bent child on her own agenda.

Yes the attitude from this one keeps climbing.  Still not a fan of her dad too much, unless we are isolated from her mommy for any predetermined time span.

We recently spent a good time at our family cabin and the first while Raquel piled on the blisters and due to letting her have walks deep into the lake almost nothing healed.  Once it was obvious untreated lake water was the issue despite still having her bi-daily dressing change with chlorine/salt bath we nixed her deep water play time.  Obviously , she was not a fan of this decision as her sister and cousin were basically in the lake at all times and the reindeer in her made for a few cries in protest.  We'd often catch the top of her head sneaking under our view from the deck, as she headed down to the lake on her own.  As soon as you'd call her name she'd do her version of a sprint down the EB hazardous path to her favorite place of blazing sun, gritty sticky sand, sharp uneven rocks, bacteria filled water and everything semi cautious parents of someone so fragile fear most.

Of course for the most part we let her go and do as she needed.  The laundry and attention to her detail was quite intense at times, but when she had buddies staying with us, we'd often forget she wasn't just as the others and often let her out of our sight for who knows how long (?).  In the end it was very rare we heard screams from a fall or other and maybe she had less problems then any other kid there.  As one received a poorly thrown rock in the temple, another found playing with the sharp end of a knife, another stabbed by the flaming end of a marshmallow.

All the true fun and games for kids at cabin and what life is all about.

In fact I was the only one to make the long trip to the town's ER for a tetanus shot for stepping on a 5" rusty nail.  So creepy having enough conscious time to actually visualize the nail puncturing through the three layers of my runner before entering my foot just back of the pad of my big toe.  After stubbing almost all my toes at one point walking around in bare feet it was kind of nice that for a week or so I had no feeling in that toe, especially since I was limping and in most cases less stable than my littlest princess.

My little phischorre - Twice Raqu and I were alone for a few days.  Only time she was into whatever I suggested.

Coco and cousin enjoying an evening swim at sunset. 
I keep hearing from other parents with older children with RDEB that she's young, she won't be that healthy forever.  Enjoy it while you can.
HA!  Yes we are and we are going to keep this ball rolling with every bit of focus and energy we can funnel her way.

1 comment:

  1. So glad to hear from you. She looks wonderful!