Friday, November 21, 2014

So good

It's really been an amazing run and it keeps going.
Yes of course the blisters are more and cover new and greater areas on her body than when a baby, but all the things we had to work out with her basic needs and the philosophizing if this decision was correct or that has really gone by the way side.
Raquel is in amazing spirits and health.  She has a spark that was evident early and hasn't gone away.

I let nurses do dressings sometimes twice a week. GASP>...

There simply isn't much to report other than she's a pain in the ass for being too much like me.






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.

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

Friday, April 25, 2014

EB kick in the %$&s

Ren and I have been thinking a lot lately of Hannah.
A girl who is linked at side bar that recently lost her life to EB and all it's complications and issues.
Losing a child at 11 it's eff'n scary.  Coco is 8!
I can't imagine or at least I'm trying not to. 

At the moment Raquel is doing very well.  She still of course has all her typical issues with eyes, blisters and everything, but she's super healthy, growing with a robust frame.  I often giggle with mixed feelings as I watch her -she kinda runs around like her dad - more of a rhino than the gazelle her sister is shaping up to be.  Cool to see a mini me, but then she's a girl - so sorry Raqu.

Raqu's school time has been great, but at home not enough is rubbing off.  She's ever more demanding and in some cases takes it out on nurses, then at increasing frequency attempts it with Ren and I.  When her attitude that the world was born to her servitude conflicts with her engagement with me, Raqu tends to very quickly be alone, in a room protesting in screams. 

I have always said, she's got the fight and personality strong enough to handle this disease, but dammit we still have to live with her day to day.

Couldn't she be just a little tamer at times?

Raqu in class- notice Grandma's sewing and fluffy chair Raqu specific?
All is good, because of everyone and everything that is going well.
No need to vent.

Saturday, February 15, 2014

Steady

Not much action around here.  Raqu for the most part has been exceptional.
There are the occasional sleepless nights for one reason or another.  It seems we are well past the effectivity of her itch meds.  She wakes wildly crying that something hurts, but after a few moments and asking her what's up she admits that her foot is itchy.

No real problems anywhere else other then her attitude. 
She's a handful to say the least.  She knows what she wants and is starting to figure out the levels of manipulation required for getting her way.

Some nurses have great difficulty making any ground with her when she has her mind set.

We are fast approaching Bella's Ball up on Grouse Mountain.  Hopefully it goes without hitch.
West Jet and Hilton have teamed up for an impressive silent auction item.
Flight anywhere they fly and 10000 Hilton points.
That will be an impressive trip for the winning bid.

If anyone in the lowermainland wishes to volunteer email the contact link and we'll see what we can do.
Go to the Debra Canada website to donate.

Here's some of the good and bad of Raquel of late.

Probably from when we were jumping on couch

After bath, getting ready to put the bandages back on
Raquel learning how to tell time
Ice cream - let mommy alone