Sunday, September 11, 2011

Stuck in a rutt.

Renata's parents arrive and Raquel plunged into one of the worst three day period in months.
Not only did she get a pesky eye abrasion she also had a few horrendous mouth blisters.  The last one we popped this afternoon poured blood as if she were shot, soaking the side of her face.
Talk about your introductions to EB.  Even the Colonel gasped (Renata's judo, ass kicking army dad).
Seems all the new nurses get here and everything is peachy.
Then eventually time catches up and they get one of the horror changes, where she's trashing and screaming and material is flying everywhere and we have to take a couple goes at a limb before it's on right and her feet or hands is a gooey mess of broken skin and raw flesh.
Thus was this weekend for Raquel.
No wrong images of EB being a peaceful disease managed well by her parents.
We didn't sleep Thursday, Friday and a good part of Saturday night.
The days were crazy too.
Except I dissapeared like a good little fisherman and caught fish for lunch today

and dinner yesterday.

Both were excellent days on the water.
Total immersion in nature and it's awesome surroundings.

I had to put my food in the sand next to this bears.
Would have been the perfect time for him to walk around the corner though, were in interested in fresh Human instead of rotten salmon.  As I had one leg out of my waders, which aren't the easiest to pull my feet in and out of in the first place.  Would have been funny watching me run down a beach, bare one foot with waders dragging behind me.  Limping and the dragging material getting caught on every other boulder I past.

Ren has semi excellent days with her parents - minus screaming baby every 4 hrs till her max dose was administered.
Renata needs a hobby she approaches with the same kind of zeal I do fishing, mountain biking etc...  It would probably be tougher on our marriage, but at least I wouldn't sound the jerk for having all the fun in nearly every weekend.
Cordelia was Cordelia.  Adaptable.
I have to side track.
While fishing today I yelled up to Cordelia that I had a fish on.  She came running down the beach chucking her baby crabs she was assembling from under the rocks yelling can I bring him in!!!!
I mean how could I not let her try.  Even though my two buddies also with us were having difficulty bringing in fish of their own.
She was great.  She was able to muscle in her first salmon on the fly.  Well I guess it's more like trolling if it's already on the line when you get the rod.  Never the less, she landed a nice salmon, something I couldn't do in my first few tires.
There's that pride again.  Prouder then her first walk I have to admit.
I mean, most kids will eventually walk.  There was no reason to think Cordelia wouldn't, but catching her first salmon.  I think that rates higher for me then those first steps.  I liked the bright interest in demanding a chance to haul it in.
Not sure how Raquel will fare standing on loose rocks knee deep in salt water tugging on a rod with the butt end buried into her abdomen.  Cross that path one day.
When we finally got it to shore I realized it was just on the edge of being a keeper as it was starting to colour prior to spawning.  This type of salmon starts to get green on it's back with a hooked nose, bars on it's side and a white belly.  This one was only showing medium signs of all this.  So I let it go.
Mr. Hoza (Renata's father) wasn't impressed.  Between the language barrier I wasn't able to explain it wasn't an ideal fish, especially if we weren't to be able to eat it for yet another day.  I already had a very nice silver one behind me in a pool made by the kids.
Why be greedy?
Off it went and so did all the other fish, as a guy tossing pots and pans moved in on us.  I guess it's hard watching a couple fly guys catching all the fish with feathers.  The lure to get at our quiet little area we'd maintained for an hour or so was too much and he couldn't help but to plunk large metal bits at the rolling salmon schools scaring the fish and us away.  Once it was clear the fish were gone, so was he off down the beach to shock another school.
Oh then there was yesterday.
After my morning of bliss, catching many many salmon, I thought I'd take the girls for a bike ride.
Raquel loves the bike trailer so in she goes and off we went down to Moja for a coffee.
Renata had arrived just moments before and commented at how important and happy Raquel looked in her two wheeled contraption.  The ride and morning was so good.  Unlike the evening before.  So I decided to push my luck after the required cup of caffeine and take the girls for a slightly longer loop.  I'd look back every few minutes to see if everything was OK.
Of course I forgot to look after a few more minutes then usual and Raquel was fast asleep with her forehead rubbing up against the plastic window of her Chariot.
Good Grief!!
I stop instantly and pull her out, only to discover I was too late.  A large blood blister had already been created.  Then in my panniced tussle she wakes and she goes off.
I had to carry her about 2 kms in my arms pushing the bike & trailer with my other.  Cordelia was breaking down by then too.  With my arm feeling like it was lengthening by 2 cms every 100 meters and nerves getting shot with little miss blood blisters and the princess whining or crying, home seemed to be a million km away.
Oh well.
Life isn't interesting if you can't get through hopeless chaos once or TEN TIMES!!! every week.

It wasn't till this evening that Raquel finally snapped out of her cycle of suffering.
She started to push the clothes basket walking again.  She's really starting to become more stable.
As well she was in the bathroom watching Cordelia bathe laughing and giggling.
That was until Cordelia put her head under water and started to blow bubbles.
Raquel screamed with the look of fear in her eyes.  As if to yell at Cordelia to stop and not drown.  It was rather cute to say the least
I think it's all Renata's fault.  If I were in charge of baths she'd be fine.  She sees Ren's deep down  apprehension for water I guess and is frightened to the core..
rock and roller

Can you tickle the foot of  a Baby with EB?

No comments:

Post a Comment