Sunday, July 24, 2011

We called the reinforcements for a night away.

Somehow we were able to line up three of our nurses and Simona.
Simona showed up at 6:30 am,
A long long time ago in a galaxy far far away
while Renata and I were in the early stages of marriage, we lived in Simona's ground floor unit (cave dwellers then too).
I had a beautiful fun and playful dog named Burny.  Whom Simona only tolerated because of her love for Renata and Renata's love for me.
Well, Burny and I would once and a while play outside on the sidewalk and small green strip by the street.
She'd bark a little, jump and race around as I'd chase her up and down the sidewalk.
At 9:30 am three quarters of the people of Vancouver would have either already finished 'The Grind' or gone to work.
Simona would open her window from way up above and shout threats about keeping the peace 'OR ELSE!!!'.   This reminds me of the even more scary threat she gave me the morning I decided to try tasty halibut patties I bought from a fish shop for breakfast.  Unfortunately the smell permeated the vents in the house and made it up three floors.
She nearly evicted us.
ME & my dog, but for the love of Renata.
How could anyone create such an ungodly smell like that in the morning???
I have to admit, it was a little fishy smelling, but 9:30 am on the street should be fair game...
Anyway, seeing Simona show up at our house so early to be the main manager of our very high maintenance little girl is nothing short of a sign of epic devotion to our little family.
ahh at least Renata, Raquel and Cordelia.
A few hours later our first nurse showed up and this team effort lasted till 7am the next day when Simona took over for herself.  We showed up in a quiet state of complete relaxation at 5 pm.
Where did we go?
We took a ferry over to Vancouver Island rented a few kayaks with Andrew and Kai and paddled to a little island in the sun and overwhelming beauty of our stunning province.
Cordelia sat in the front of my kayak, Ren was supposed to go with Gabi, but she pulled out at the last minute as we were to board the ferry.
If it's not skin it's something else with this family.
Renata was then stuck alone in her own kayak.  She was freaking out.  I tried to explain some things about kayaking while coming over in the ferry, but she wouldn't listen, so I left her to it once there.
Ren is a little scared of water, waves, physical activities that require many moving parts. haha
not really.
She was lucky Andrew was along and was willing to give her pointers as Cordelia and I were too concerned about catching a few of the fish we kept seeing jump all over the place.  I knew she'd manage, even if she didn't we would have had a great open water rescue story to add to our weekend.
Were we worried about Raquel?
Worried to leave little miss fragile?
Not really.
Raquel's nurses are exceptional.
Simona goes without saying.

In my life, I don't think I've had a better two day one night camping trip.
The only thing that would have pushed it over the top, was if we were able to pawn Cordelia off on Andrew and Kai and have the tent to our selves.  We did try, but Andrew was wise to our pleas.
Basically the result was feet, arms and legs flopping in our faces all night as Cordelia acted more like a fish out of water.  It wasn't till we got her back into the sleeping bag and zipped it up and tied it tight over her shoulders, making her a safe worm like creature than a thrashing monkey. We were then able to get the rest we had come for.
When Renata woke she realized the importance of her breast pump and relieving the pressure.  No matter, with a few laughs and funny looks from campers walking past we were able to express some creamo for my coffee and alleviate Renata's pain.
3 1/2 hr kayak from cast off

I think Cordelia is having a blast

Tent door looking back to beach

Father and Son

We made a couple phone calls back to Vancouver to see how things were going.
Of course Simona bragged about how much better a care giver she was with Raquel.  Hardly a peep from her and all was bliss.
Yeah right...
I have to admit.
When we showed up at home, our house spotless (till I brought all the beach onto our bedroom floor while unpacking) and Raquel was a star shining and looking very happy.  She even napped well shortly after we arrived, then played and goofed around with Cord and I later, just like we'd expect...
Cool.  Fun to feel normal for a few days.
So grateful we've been able to have some amazing people helping out with Raquel.  Sure helps clear the cobwebs and dark clouds of G-Tubes and EB horrors.
I even think when Raquel is Cordelia's age, we'd be able to attempt this trip with her too.
Except, I'd have a small sailboat and maybe there will be a cabin of sorts at the other end.
One way or another it'll be a family adventure and it's gonna happen.

Went for a meet and greet with Raquel's Gtube surgeon.

When we started this ball in motion I was the one pushing it.  Today I found myself sitting along side Raquel and Gabi (day helper) listening to a nurse and surgeon instruct me on all the neccesary procedures I'll need to know - how to put it in and replace, what problems could come about in the first 8 weeks, maintenance issues etc etc was a little numbing.
I listened and watched, well I watched.
Plastic tubes and valves littered the table along with a picture of a sometime skin bulge that bubbles up from the lower layers of the skin.  An example of the bodies natural mechanisms to purge foreign objects.  Healthy cells I'm told, mostly just an irritation, ugly and itchy....

Then when the meeting started to wind down, Raquel jumped into freak out mode.  Likely overtired, but still managed a diaper change and lance a nice little blood blister on her gum. 
Felt like chaos for a few moments. 
Melt down.
Me and a little bit Raqu. 
Not Gabi. 

Ren is got some water works just now.
She's doing the diaper and looking at Raqu's perfect little tummy.
"We should take a picture of this beautiful bare tummy before we stick a plastic tube in it' she says.
"Yeah". was my response.
Lots of condolence she's getting from me right now.

I haven't even moved from my near horizontal position on the couch while writing this.
I'm freaked out too.  I know it's obviously for the best, but like winning the Recessive Dystrophic Epidermolysis Bullosa lottery, who would bet on a life where a parent decides to push an early decision to have a new stomach port attached.  The USB to health and nutrition. Especially when it's actually the only place on her body that's not seen a blister, ever......
Crazy life we live.

Monday, July 18, 2011

If it weren't for eye issues we'd be doing wonderful

It seems every morning depends on how or when Raquel will open her eyes.
This morning it was only a half hour, but it was because I medicated her a tiny bit extra.  She was a little thrashy and does this annoying tripod styled thing where she plants her face into the ground (her safe zone matt) and then walks and moves forward rubbing her face along the floor.  Joy.
She's not had any real rug styled burn from that, but the friction possibilities are frightening.  Especially if in the moment I take my eye off her and she reaches the wool carpet.
Once this part of the day is over, then she's been very good.
Yesterday Ren was off on a few occasions and Raquel and I had a wonderful time together.
First, we made our resident teen get out of bed before 8 am and go for our Sunday muffin and coffee run at the competing coffee shop to Andrew's Moja.  He should be open Sunday, although I like to change up the espresso flavors, otherwise it would get boring and I'd probably not appreciate what they got going on.
Then took her for a walk with Cordelia and Raquel.  Went down to the harbour walk along a creek and watched a big ship get loaded with Pulp.  Saw a few seals chasing some fish along the shore.  Of course that made the rest of my day difficult wondering when I'd get to go fishing next.
But really, Raquel is getting pretty good.  We have our struggles nearly every other day where the crying gets close to red line, but it's all been manageable.  The last time I felt shattered was up at the cabin and the first dressing change.
Cordelia and Gabi are off today to do some sailing for the week.
I'm very proud of Cordelia.  I think it helps that her big cousin is going, but it's playing up to how I see Cordelia and I's future camping trips.
I used to dream of paddling a canoe across the country, well Rockies East with a few notable portages, but now it's a little 17' sail boat and exploring some of the giant lakes we have in the interior of BC.
Take a week or so and just have fun.  I can't see Raquel doing those trips, but time will tell.  Ren has somehow been lost in that equation.  I've mentioned the trips so many times and she's not said, 'yeah that's cool I want to too', so I kind of assume she's not interested.
Funny, marriage.  So intertwined in many ways, so out to lunch in others.
Maybe we have a sumo suit built for Raquel so she can sit in the boat and not get bounced and blistered to hell.  Plus when she goes overboard when we capsize, she'll have a full body suit floatation device.

Tuesday, July 12, 2011

1/4 of dressing change on sunny deck with 5 and 2 1/2 czechs and a canadian.

The Deck Safe Zone While Mommy Was Out

Cabin Fever

It was a fun trip, but like as is our life.  Ups downs.
Ups were the moments and mornings that Raquel woke up with a smile on her face and continued through the day.
Problem was they didn't come till end.
We arrived at cabin late at night, in morning Raquel's foot was soaking wet.  Renata figured it was her sticking it in her drooling mouth.  I also in denial was looking up at the roof wondering if our ancient cedar shake roofing had finally failed.
It was when she really started to become irratible that it had to be what it was.
I giant blister.  One on her foot we hadn't seen since the days of the hospital and the few months after it took to get the skin back together.  That dressing change was total chaos.  Renata was holder and her least favorite job.  One that she explains if we did together on a regular basis would certainly end in divorce.
Yes I act like an ass when she helps.  Mostly frustrated that she never pays attention when we do it on every other occasion she's there helping distract Raquel.  It didn't help that the space and atmostphere wasn't what we were used to.  It thankfully went up hill from then on...  Gradually.
One week at the cabin is never enough.  I just get the hang of it.  Relaxing.  I gotta do this that. this lake that lake, Oh then be an active participant in family matters.
Sure helped that Renata's sister is here from Czech.
So nice having her sister to grab baby when I gotta split.
Cordelia still holds this years largest fish.
Raquel is making some great sounds and has become very aware of our requests to a few funny questions.
Due to the influx of Czechs in our house hold they are almost all Czech.
I can fumble my way through them and get the desired result, but if Gabi is near, she has a disapproving smirk, but usually lets me get away with it...
Move vids to come..