Tuesday, May 29, 2012

Up Down.

Back to Wunderkind.
She's had an exceptional day.
Full of giggles and her budding command of the English language is hysterical.
I can't say how fun it is to see how she's been developing her communication skills.
Although I'd really like to see her retain the proper request for water, instead of the "ahhh ahhh ahhh" as she opens her mouth and gestures with her thumb to fill it with cool liquid.  "Peeas".

Even though I've suggested the next day I'll start.  OR the next.  I did finally offer up some solids past modified milks.
This evening she motioned me to the floor in the kitchen to share my banana.  I can tell you the amount of courage over fear was tough to get a handle on as I let her have a few small mashed spoonfuls. It wasn't enough either, she would have eaten half the banana would I let her.
I've often struggled with how much can she taste?  Her tongue is shinny smooth and all the taste buds that you'd expect to see have been scabbed and blistered off.
So I thought.
With almost every mouthful she'd mmmmmmm.
The kid doesn't eat.  It's not like I can pretend to suggest Balkan yogurt, Sour cream and Rice milk are anything.  Does that even count?
Well, I guess against the crap flavorless yogurt her mom and dad buy a banana is ecstasy and worth every single M.
I'm reminded of a story Renata tells me about living behind the iron curtain as a youth and the corner grocery store brings in bananas.
Her dad would send each of the children to buy the maximum amount as there was no telling if or when they'd see them again.
Mmmmmm banana.

We certainly don't take anything for granted with this kid.
It's like walking for weeks in a sandy desert full of dunes.  Then plunk you've rolled down a bank and find yourself basking in an oasis.
Then without warning, in the middle of the night ,you find yourself with sand in the cracks and no reprieve from a relentless suffering.

Then plunk, another oasis.


Oh and if in the remaining dinners we're receiving has a banana thrown in, Raquel will mmmmm you with every satisfying M.

They have been great and the timing perfect, yet again.

Thank you everyone!

Monday, May 28, 2012

EB is for SH&$

Poor kid!! Bad night followed by really bad day.

Lucky for me I had lots to do in yard, and was only mildly disturbed by crying discomforted child. Ren and my mom took turns and the brunt of the anguish through most of morning to late afternoon holding and rocking Raquel in the dark.
 I couldn't help think of Courtney (Tripps mom and hers). There was a semi emergency call to a few friends to help with a dressing change early in the morning. It was certainly one of the marriage saver type calls for help. Niether Ren or I had any patience for each other this morning  We would have grin and bared it, but why when we can spread the suffering to willing participants.  All our patience used up or saved for Raqu.
I had figured her feet were back to bloody oozing muck from the type of struggles endured through the night, but once Andrew arrived and we investigated, each foot was fine.  ????

The day continued badly for Raqu and every time I showed my face indoors I couldn't find another hard labourious job in the yard to do fast enough.
It's possibly her eyes. Could be something internal - intestine, stomach, throat???!!,!!!
No idea. Just one grumpy kid in lots of discomfort. She came through in blips, but I can tell you with exact certainty they came in the peak wave of medication.
 I caught Ren again in blue tears of Why me? Why her? Why us?
 I just turned around and went to dig more dirt. Hard to be compassionate when life sucks for 3/4 of the family. I can't afford to be blue right now. It's just too easy to get pulled right back down into that hell. Life ends up passing by and nothing gets done. At least Coco is living outside this bubble.
I don't entirely know how, but she's the brightness around here no question.

Even showing River Monster episodes to a 6 year old just before bedtime is having none of the typical effects on youth and Monster fears.  In fact it's the vast opposite, she's interested in heading to the amazon to fish for Piranha and giant cat fish.
Of course we won't go swimming.

Friday, May 25, 2012

The kid is alright

I've been too busy with everything to update.
There have been many exciting and fun going ons outside the EB crap.

There are some funny stories I'd like to tell, but don't have much of a moment.

Raquel has certainly come on through the darkness of what was nearly two months of horrors.
In the last week we've almost got Raquel down to one awake session during the night.
Last night being one of the most benign of them all.  Seems like she just wants a cuddle when she wakes and realizes she's no longer on my chest while watching the remaining episodes of River Monsters.

Ren's been a sport and been able to do the bulk of the night time shifts once we get Raquel administered with the appropriate pain or itch relief. 

Her feet have nearly healed and very little looks to be bothering her anywhere on her external body.
We've fed her soup and maybe this weekend we might actually test that punched out esophagus with some sole (flat fish).

No vomit, No screams, No choking.
Life is perfect.

I suppose.

Monday, May 14, 2012

The dialatation is done

Raquel is OK.
Her operation went very well and the Doctors that performed the procedure were great and listened and read the literature I supplied.  I guess they had their own too.  haha..
She's been suffering a swollen throat since.
I suggested to the team through some advice from Casey's mom Beth that they give her some steroids to prevent this.
The GI Guy agreed it would be a good idea and had some on board before the operation.  Except that was Friday 9 ish.  I left the hospital to work around noon, Renata took Raquel home at 4 but I guess didn't push to follow up that part of the plan for her continued health over the weekend.

If it wasn't for Advil I'm not sure how last night would have gone.  She basically had a mouth full of saliva every 3-5 minutes.  She walked around with her mouth seeping at the edges till she'd open up for either a comment or demand and long viscus drips and blobs would spew out and then she'd be on her merry way, containing the next blob for another area of our floor, couch, shirt etc.

Right, we had some vomiting last night mixed with some dark brownish blood after her last two feeds.  Then some brighter fresher colours later.  It was fun all round basically.

Ren pulled the night shift on the couch watching over her, listening to nearly every breath I suppose.  She looks ragged, but lucky for her Raquel's nurse is here and she can rest some, while I've pulled a disappearing act.

Ren had a moment last night shortly after Raquel had fallen asleep with heavy sobs and tears.  I couldn't bring myself to sooth her as the darkness had already settled deep into my mood.  My sense of remorse couldn't be woken despite the fact I had shortly before that - out of the blue - scolded her for mentioning to our friends earlier that morning (on Mother's Day) that she doesn't want to recognize Raquel's birthday as it was when she was born.  She went on to say she's happier to recognize the day before when everything was still perfect and we were all EB free. 

Renata still feels that was the saddest day of her life. 
I was mad and still think it was one of my proudest - with a few immediate glitches of course, but nothing to do with whom Raquel is. 

If only the world's atmosphere was filled with amniotic fluid.

I understand her honesty, but I don't understand saying it aloud and how FKing shocking it must sound to people, especially the other new couple along for brunch who had just met us moments before.

Of course I have my way of shocking people with other aspects of Raquel's existence, but for all together different reasons.  Love it, hate it, I have my odd reasons that contain thick levels of morbid humour and passive-aggressive disdain for beating around the bush, which usually jumps quickly to the horrors of reality that cut at the edges of hope. 

I can't stand saying it's not curable.  So mind as well beat that into the person asking the questions before they get to 'Is it curable?'.  It's truly a knife to my heart every time I hear it or say it.  So I'd rather prop up the angry darkness inside before I come to it's inevitable end comment.

I guess Ren was just being honest, we clearly have our ways of explaining our sadness.  Interesting enough, we both probably have only a few more months of speaking our minds in public before it's an absolute NO NO with Raquel's burgeoning comprehension.  Although I guess Cordelia must have heard at one point and of course Coco can read and now has a IPAD to keep tabs should she wish.

Which reminds me - thank-you all who donated to the Raquel fund.  We bought it as a tool for Raquel and Coco to take their minds off whatever difficult moment we're in. As well if you'd see Raquel slide her bare finger across the screen shooting birds or bowling and clapping when she gets it right you'd see it's worth already.  Among other moments.

Anyway, Ren and I have been genuinely concerned for Raquel's immediate future in this conscious world we live in and it's not been hoots and hollers - giggles and fits for a good month now.  Raquel has peeked through on many occasions and been her goofy self and been charging around like any nearly 2 year old would. 

Problem is when I see her going hard, I'm quickly overcome with anxiety.  I watch and wonder when is she going to trip on this or that and skin her entire face, knee (again) or will all that running and walking push of what is the remaining layers of good skin on her feet?
Which was the case at our wonderful Mother's day brunch at our friends house.  I didn't actually recover from that darkened mood for hours afterward and basically did my best to avoid Raquel, Renata and Cordelia for the following 5 or so hours pretending I was actually doing yard work.  I was cracking at my seams as I was attempting a good face while I urged Ren and Cordelia to go home.

I need a freaking EB break!!
HOLY CRAP AM I WHINING ABOUT EB LATELY.
I admit, Ren needs one more!!  So any of her friends reading this.  Call her.  Take her to Victoria, Seattle or wherever for a night or (GASP) TWO - she needs a recharge badly.

I had my typical little 5am catching (not fishing) since. I was able to bring home (finally) a nice three family Coho (salmon) for Mother's day dinner.

Ren had a few moments with Cordelko, but that's only minor self sufficiency.
Oh yeah.  Cordelko.  She's been pushed aside this little while and is showing subtle signs of being largely ignored.  If it wasn't for our extended friends and family we'd for sure be having a problem on that front too.

My mom.  She rules.   Without her glue, we'd be totally lost.

Top 2 mom's ever.
Only because who she thinks is the best mom gets the top spot, who I'm pretty sure is my dad's mom, based on our recent conversation on great role models.

Wednesday, May 9, 2012

Ballooning the Esophagus

It's coming.

Those decisions that need to be made.
You know, the ones that seem so difficult, but in the grand scheme are really quite trivial.


It seems Raquel's trivial moments are when I look into her eyes and try to differentiate between getting right into panic mode or just watch a benign little cough.

This morning it was back to the thick blood stained mucous.  Her coughs started out small enough.

At least we basically slept through the night.  Ren got up and half asleep I wasn't even sure if it was for Raquel.  A short time later I heard her call for some help.  It didn't sound too urgent so I closed my eyes to gather just another few seconds to reset my brain so that I was ready and capable of dealing with what ever was needed of me from yonder, but the second call never came.  I tightened my eyes and relaxed into a long awaited deep sleep.

Like I said the morning became very stressful and while I watched the clock turn 15 minutes past when our nurse was to arrive I realized I should have probably checked the messages. Thankfully Dammit Janet was able to help out for a few hours, except I'd already been lost to frustration, helplessness and stress for the day.

It culminated only moments after Janet took hold of Raquel when I couldn't find a DVD or CD or something and proceeded to absolutely loose my marbles and pulled a little hissy fit chucking empty cases wherever the wind and momentum would take them.

Nice.

Nice that I call a friend in to help and I go ballistic with a few CD's and covers within minutes of her arrival.

I'm thinking this will be a reoccurring theme for the week.  Me losing it in milliseconds.
The intubation procedure of putting a breathing pipe down into Raquel's trachea was the straw that broke the camels back when Raquel went from being able to eat fish and other foods to not being even able to drink rice milk once and a while.

I don't see any other way.

Even though I have complete fear of another horror show as was with re-bandaging Raquel post G-tube surgery? 

I can only hope the anesthesiologist learned a lesson of what not to be repeated.
I know the crew at the hospital has done a surgery of this type a short while ago, so I hope no one is on holiday, retired or taking a day off.

Haha or Renata and my marriage will take a few day hiatus.

Monday, May 7, 2012

Melancholy and the Infinite Sadness

Raquel is doing very well of late.
It's just those little bumps that drive us crazy.
She goes from doing somersaults on the couch showing off to her grandparents.  She keeps pushing the envelope doing them over and over, pulling giggles of amazement and nervous laughs from us all was we watch and guard the edge intently.  Then moments before she's about to go to bed, she's wandering around the house when she falls onto her knees out of site around a corner.  Luckily we did a diaper change as we were able to see what all the crying was about as she pushed off two patches of skin three inches in diameter which quickly filled with blood.

As Ren and I poked and snipped the corners of the blister to drained the blood, we were filled with a quiet 'melancholy and infinite sadness'.

I remember from my early 20's the title of a CD from the Smashing Pumpkins making no sense to me at all.
What can Mellon Collie and the Infinite Sadness actually be?

Sadly I think I'm beginning to know now.
(my spelling a little different than theirs)

It's there and always hanging over us and it's depth I'll likely never understand.
If I do it'll only be because I've out lived Raquel.


Saturday, May 5, 2012

Mending

Raquel has certainly come past the horrendous cycle.
She's wandering around and back into getting into everything.
Acting like a goof ball and simply enjoying life again.
What a huge weight off our shoulders.
Now all we need is her to sleep longer than 6 hours.
3 am is going to be exactly when she wakes up tonight.
Exactly.

Wednesday, May 2, 2012

LOOKING MUCH BETTER

NO TIME TO POST.
BUT FOR THOSE FAMILY MEMBERS FAR AWAY, RAQUEL IS COMING OUT OF HER CYCLE OF PAIN, BLISTERS AND SUFFERING VARIOUS EPISODES OF ASPHYXIATION.
THE NIGHTS ARE STILL ON A FOUR HOUR CLOCK OF WHEN SHE WAKES AND SCREAMS DUE TO 'THE ITCH', BUT OTHER THAN THAT SHE HAS BEEN GREAT FOR THE LAST DAY AND A HALF.
I EXPECT THAT IT'S UP HILL FOR THE FORESEEABLE FUTURE.