Thursday, December 27, 2012

Never leave glasses unattended.

We were cleaning table after a dinner and we hear clunking and a solo dialogue only to find this.

Enjoying what we get

Christmas Eve was a little exciting. So no pics as promised.
Moments after I posted that Raquel wasn't starting the day right, we had another little mishap.
Ren was doing her best to get our dinner going. For her the Christmas Eve is the all important family dinner.
Considering I was an hour late from returning from fun she was a little less humourous with Raquel laying on the floor in the kitchen, eyes closed and rather grumpy.
Things really went sideways when Ren stepped on her hand while crossing the kitchen. We each took our turn with elevated expressions of emotion.
First of course Raqu let it out, then I attacked Ren & once she'd had enough pressure clumped on by me and her own thoughts of guilt, having possibly smeared off all the skin on her daughters hand, she let me have it back. As mad and frustrated as I was seeing Ren up me by a few octaves and the deep red hue of her eyes and face I quietly let her run the course uninhibited.
I sent out a couple calls once she disappeared down the hall from the kitchen. One to Dammit Janet and the other to Andrew for an emergency change. It was clear Ren and I weren't going to be able to work this one as a team within the short term and help would be needed.
Once help did come it wasn't all that bad. Just two fingers had blistered and filled with blood. It took a little effort to get her to comply and the change went without a glitch. By the end Ren and I were on speaking terms although still not in agreement who's fault the stepping on the hand actually was.
I still think closest person passing by the prone child would be it, regardless of extrenuous circumstances. Even when the child who has few full sentences said, 'Mommy did it' moments after.

I'm only making light now as after a second change the fingers look remarkably well. I guess it helped she was layered in many blankets and we got to it quickly.
Funny this happened as earlier this evening Coco ran across the couch while Raqu lay covered and sleeping.
I stood amazed at the door watching Coco seemingly standing on top of her sister yet still listening to the sleeping child's deep breath in perfect rhythm. Then I lost it again.

It's been fun.

So for the entire Eve, Raqu opened her eyes a couple times. I'm pretty sure this was my fault as I medicated her into oblivion fearing the worst. Christmas morning she woke and all was normal. Happy little voice and she charged around all day as if nothing happened the day before.

Again, I don't get it.

At least her knees have healed and most of her current wounds. She's got more now in various spots than I think she ever has. I'm thinking the itch is going to be a problem once they all start the crusty scabby transformation to her normal collagen free milia dotted red blotchy skin.

The poor girl.
It's hard at times, but when we have great days like Christmas and today and watch a goofy fun loving kid do her thing it makes the hellish moments livable. We know pleasant times are close and there has been no way of telling when things will turn.

Monday, December 24, 2012

Alpen glow

4:30 cries.
wide awake at 6 and everyone in the household fast asleep so what to do?

Go for a hike up a mountain and enjoy the peace that only the an alpine buried in 3 meters of snow can.

I unfortunately didn't make sure my camera had a full charge.
Which means I alone watched the colour of orange light up the peaks above Vancouver.
The clouds were low and socked in the entire mountain but for the last 200' to the first pump.

The sun made it's break from the horizon just behind the tip of Baker across the boarder to the south.
That would have been the shot as a 100kms of a flat pillowy blanket tipped in vibrant orange separated the peaks.

Funny that I was sitting taking a break eating a couple oranges.

But before my camera died I got off this, 30mins before the sun rise.

Got home just in time for Raquel to wake.  Wasn't an easy wake either.
Lots of 'no like daddy' (s) and the yang MOMMY!!! as she walked out the door in perfect timing.

At the moment I have a full lap of child quietly hunkered down getting a tube feed, eyes closed, fresh blister under nose from wiping snot from her face and some blood trickles at edge of mouth.  We are quietly waiting for the pain meds to pull her into this world and other than whats going to be a dreadful dressing change we'll have a wonderful day.

It's the bianual Euro Christmas, so today we open presents.
I'm a little unclear how we'll explain Santas evening visit, then again how he'll deposit a few stockings over night.

Merry Christmas all.

I'll get a happy shot of my princesses sometime today in front of our CHARLIE BROWN tree.

Sunday, December 23, 2012

Pre Christmas Cheer

The relentless giving in which EB is capable, is quite amazing.
A few days ago, I was playing with the visco paste dressings and put a big patch on Raquel's knee.
She had some dry skin and I figured it was a nice easy way to put a little zinc on her knee and keep it there for a while in a way it wouldn't wipe off with clothing.  Ren was helping with a dressing change at that time and I guess the idea stuck.
A few hours later Raquel took a decent tumble and skinned the entire area of her knee.  The skin was mostly intact with a few rips at the top edge letting in the painful air and opened up the tender skin to the constant abrasion of her silks.  Ren figured on putting a little patch of visco paste bandaging to protect it.  Problem with that material is if it's left without a protective coating for too long it drys quickly then becomes stuck to the wound.  By the next morning when it was time for a diaper change the blood had dried and so to it the little bit of bandage.
I tried to soak it off, but in my attempt to put a damp cloth next to her knee she fought me off, tearing off the remainder of the semi protective dead layer.
Since then if her pain hasn't been managed she cries and limps around.
It didn't help that I tried to feed her a bit of banana.  She's now completely forgotten how to swallow anything but water and yogurt.  So she's had blood trails coming from her mouth to match her knee.

It's so refreshing to be reminded of how things have been as we see those sure signs of suffering by blood soaked sheets and pillows.  Thankfully she's not been tumbling out of control with issues.
Just one here, one there and easily administered.

Every other night is one that is slept through, so it's really not that bad.

If your name isn't Raquel Bella.

Tuesday, December 18, 2012


We just got slammed with snow.
A whopping 4cms and traffic is at a stand still, as it quickly compacted and turned to ice.
All the coffee shops are empty, as everyone sits grumpily un-caffeinated in their cars, stewing at the stupidity of others and the mild guilt it could have easily been themselves that wiped out 6 static cars on the freeway.  Wondering why, this isn't the year they finally bought snow tires.

But since no one else doing ballet twirls with their cars down slick sloped streets bouncing off quarter panel after quarter panel has, why bother.

It is somehow strangely accepted, that we Vancouverites are all delayed three times a year because of the magical snow.  That we also kind of accept we're almost all reta%$#d when it comes to our safety and that of others.

Maybe it's that we've all done bumper cars as children and we feel invincible.

Kind of like me, before I found out the hard way I carried a screwed up gene that's made a significant part of my daughters life a living hell.

Won't go out in the snow without snow tires again will I.....?

My little buddy has taken a few big falls of late.
Skin missing from - nose, both elbows, both knees, forehead and finger with a side issue with her eyes.  Joy it's Christmas, even EB is in a giving mood.

Sunday, December 16, 2012

Payback is a ...

I just realized Raquel is purposely stepping on my heart. Not unexpected when I can be perceived as a bearer of pain and suffering.
Not like it is enough for her to nearly always cry for mommy when we are left alone, but she's taken it another step in the last few days, not exactly subtle either.
Simona came over to mind the little ones while Ren & I watched the Life of Pi.
Giggle Giggle.
So wonderful watching a movie with intensity and not have Ren walk out go to the kitchen, decide to fold towels in the laundry room, etc. This was awesome as the tiger lunged in 3D a few more times than most movies bother to. Ren couldn't hide, she couldn't run and every moment she figured it was over, fangs and claws jumped from the screen into our laps.
I guess the only reason I wasn't jumping and squealing was I was watching Ren and giggling beyond control.
Anyway,back at home I'm watching Raquel give Simona unrequested hug after hug. Big, warm and wrapped little girl necklace. Do I get one when we left or came home? It's like she knows giving everyone else the affection is starting to get at me.
Then for a coupe de gras, she (Raquel) was returning from depositing my banana peel in the compost. I asked her wasn't actually expecting she would walk to the kitchen and know exactly what to do. On her return I was so proud I put up my hand and said 'high five Quel' she smiled put up her palm and walked towards me hand extended and not two feet before we slap hand to silk mitten she sidesteps me and goes right to Ren giving her the five. She glances a coy sparkle in her eye and grin.
Like a knife to the heart.
Again, when diplomacy is taking too long who pins her down and yanks crusty scabs from her elbow, or lances a moving target and sinks the needle deep into the tender flesh or dresses her hands so quickly from freedom and touch.

Why would she?
I do all that and it's not like I do it with the soft painful eyes of sorrow. The more difficult the situation the more likely I am to snicker, or yell angrily when she's about to do some major damage to herself, because she refuses to sit still.

I figure this is the edge.
Glad, at least Coco his shaping up nicely as a daddies girl.

Monday, December 10, 2012


The kid has been fine.

Although that doesn't change the fact she likes to have her sessions at various times.
Screaming through the night for no apparent reason.

But who's complaining.
she has long eaten food other than yogurt, but doesn't stop her from feeding everyone else

Winter has come.
At least the dreary Vancouver existence can be altered once and a while by this.