Wednesday, May 28, 2014

An EB Normal

Life is good.
Raquel is holding steady.
We've cut most of the issues that might arise with getting blisters outside of sticking her in a bubble and it's working.  There are still giant blisters that envelop most of her foot once every week or so.
It's literally the moment it heals that it falls apart again.  It's almost to point where we might think of doing daily dressing changes.
Problem with that is we'd have to do daily dressing changes.
I like the days off I get from seeing and dealing with all that crap. 
Currently we have nurses that are doing great in taking away up to two days a week, but still it works out that there is no one else around to do second and I have to be there.  I shouldn't whine, I know many families that do once a days for 20 years. 

The JOY we must look forward to.

Raquel has totally gotten a hold of her pain within for the most part.  She knows how to cope and it's amazing.  Of course there are times during changes and the blisters are cut and the air gets in or the zinc paste that make her little body shudder.  It's just all the other time when awake that she is very good at either hiding that she's in pain or getting past it.

Her personality is all of her own now and that there is no doubt.  If she sees weakness or indecision by anyone in her care or her daily planning she's all over it and does everything in her developing brain to manipulate the situation for her advantage.  This is with everything from the moment she wakes till the time she goes to bed.

Thankfully we have a couple nurses that have been around for so long now that in their company she tries little of it or gets away with none of it. 

During the last dressing change I taught her how to do a finger war.  Was I ever in fits of giggles as her will and tiny fingers would accept nothing but total domination of my larger than normal man hands.  Yes we practised safe war and of course my hands were lathered in Aquafor and zinc as was hers.  Hopefully we can continue this little game long long into the future.
I kind of doubt it, but I'll keep the dream alive.
Not really sure why she's allowed on our friends island and gets whip cream every time we go over. Notice her knee pads.  We started that from moment she's awake till after she sleeps and her knees have been amazing!  They are wrapped with conform between her silks and pants.

She's getting big and looking less alien more human

We're painting on zinc nails before rewrap

What's a blog post without some gore

2 comments:

  1. I miss you. Everything ok?

    ReplyDelete
  2. I miss you. Everything OK?

    ReplyDelete