Thursday, August 30, 2012

Masquerade

The after-school hours yesterday were spent creating fancy masks! (A good use for all the left over popsicle sticks we had from the caramel apples.)  And, of course, I put on Andrew Lloyd Webber's 'Masquerade' and blasted it through the house. It was phenomenal.

 

 And last but not least, Lorelai's creation:
 

And a big happy birthday to my brother, David!!

Wednesday, August 29, 2012

The First Day

Presenting... 




Lorelai Leigh ~ 2nd Grade



and...

Alexandra Louise ~ 4th Grade


~Sisters~
 

It was a bit shocking to take a look back at our other first days. These girls of mine are growing up... quickly!

Tuesday, August 28, 2012

Caramel Apples 2012

A
Back-to-School
Tradition:



Off to share them with neighborhood friends:

School is back in session today! The girls were just giddy with excitement this morning as they put on their new clothes and modeled out front for pictures (expect to see those tomorrow!)

 

Monday, August 27, 2012

A Wise Sister Once Told Me...

Why must the mundane 
be mundane? 


That's wisdom from my sister, Jennifer. I hear her say it often; pondering why people - in general - live in a predictable, ordinary, and mundane fashion. 

What a dreadful thing, to be mundane

 Let's not be like that, okay?

Thursday, August 23, 2012

"This was not fiction"

One day, a week or so ago, when I was staying in Seattle Children's Hospital with QE, I glanced out the window and this sight caught my attention: 

 

Five people (there was actually a sixth, just outside the view of my camera), each on a phone. 

This sight caused me to reflect upon one of my favorite books, Fahrenheit 451 and a quote from Mr. Bradbury himself in regards to his novel and the reality of the world we now live in:

In writing the short novel Fahrenheit 451 I thought I was describing a world that might evolve in four or five decades. But only a few weeks ago, in Beverly Hills one night, a husband and wife passed me, walking their dog. I stood staring after them, absolutely stunned. The woman held in one hand a small cigarette-package-sized radio, its antenna quivering. From this sprang tiny copper wires which ended in a dainty cone plugged into her right ear. There she was, oblivious to man and dog, listening to far winds and whispers and soap-opera cries, sleep-walking, helped up and down curbs by a husband who might just as well not have been there. This was not fiction.

Ray Bradbury wrote Fahrenheit 451 in 1953 and the quote above was from later that decade...over 50 years ago. And look at us now - we carry in our pockets and in our hands computers; computers that can deliver entertainment, communications, and world news to us instantaneously. This is nothing short of a miracle, in my opinion. 

However, when I read Fahrenheit 451, as well as the observations of Mr. Bradbury, I realize I need to be careful; to utilize my phone appropriately and cautiously so as not to be swept away from the sights and sounds of the world around me. We need to find balance. A way to take advantage of modern technology - but still live present in our more immediate world. For I would hate to ignore the feeling of the breeze on my face, or miss the smile from a passerby on the street. 

I need to be more like Clarisse McClellan.
  

Wednesday, August 22, 2012

Cork Boards

Isn't it funny how simple some projects are, yet one [me] tends to procrastinate it? 

Take these bulletin boards, for example. I had the idea several years ago to hang a few in the front hallway so that Alexandra and Lorelai could display awards, schoolwork, art, etc. And - for years - I didn't get around to it. 

Well, I spotted these cork boards at a back-to-school sale several days ago for $4.99 a piece and snatched 'em up real quick. Finally, my vision is complete! This little hallway turned out better than I imagined; especially with the girls new backpacks hanging side-by-side. 

And with that, we are officially ready for school to start (next week!).

 
  
 

Tuesday, August 21, 2012

Home

Sometimes, in the storms of life, tender mercies occur; sweet moments where you can see beyond the current struggle and relish in a beautiful miracle. 

Elisabeth has been suffering lately. There have been moments where she is comfortable (see below) or where we have her drugged enough that she thinks she is comfortable, but mostly she hurts. 

However, this past weekend a small miracle occurred: Elisabeth said another word! 

For those keeping track, that brings her vocabulary to a total of three words! 

1) Again 
2) Mama 

And her third word is.... home

What a beautiful word. A word that for her is extremely significant. You see, her life is spent away sometimes; in hospitals and doctors offices. Those are places of uncertainty - where scary things can happen.

But home...home is safe.
Home is familiar.
Home is happy


(Do you see that rug? Is that not the most splendid rug ever? A fellow hydro-mom, Dana, sent it to Elisabeth. It is just what our family room needed - the very thing. Thanks, Dana!) 

(Can you see the look on her face after she repeats a word? She knows she has done something big!)
Home.

Monday, August 20, 2012

Under Lock and Key

For years we have threatened to put a lock on the pantry.
 

 We finally did it. 


***Elisabeth is still struggling...though I would say that this last week was much better than the previous one. There is no place else to take her in Washington State. Currently working on the what-to-do-now plan. These things aren't easy.

***Even though she has had some serious struggles as of late, Elisabeth has some really exciting news to share, too. Check back tomorrow!
 

Thursday, August 16, 2012

Formulating a Plan

 

We are home. 

It always feels good to be home after living in a hospital. It makes you appreciate things - like two ply toilet paper. 

We are currently focusing on keeping Elisabeth comfortable. Fortunately, Seattle Children's Hospital armed us with an enormous bottle of valium ('twas the least they could do). 

We are also busy formulating a plan; figuring out what do and where to go. Because there's one thing I know for sure: we can't give up. Elisabeth needs us to find someone with answers. I cannot allow her to continue living in pain - it's simply not an option. So onward it is.

My goal is to get her better by her birthday. 

 (Can you believe that my little Queen Elisabeth will be turning 5 next month?!)

Tuesday, August 14, 2012

Pain and Suffering

Sadly, the doctors here at Seattle Children's Hospital are out of ideas. They claim that the shunt is perfect; that it can't be contributing to any of Elisabeth's current issues. And with that, the neurosurgeon's have washed their hands of her. 

I spent a lot of time yesterday in tears - it's the first time I have cried (here). I was sure they would help her - they are ranked in the top ten nation wide, for goodness sakes. But instead they just threw in the towel...it was devastating to me. 

So today we plan to leave. It's time to go somewhere else. Elisabeth needs help. Desperately. I just have to find someone who is brave enough to take on the task of figuring out what's wrong.

Wish us luck.

[A small sample of what's been going on for the past 2 1/2 months. Sometimes for hours and hours and hours on end.]

Monday, August 13, 2012

Keeping Content

 

I have mastered the art of keeping content within the walls of a hospital for days and weeks on end. 

I require only three items: 

My Kindle, a spoon, and a big ol' jar of Nutella.



Elisabeth Update:
On a more serious note, Elisabeth continues to suffer. Yesterday was rough for her...lots and lots of agonizing pain; sometimes we are more successful at controlling it than others (yesterday we were unsuccessful). The plan for today is the shuntogram. I am keeping my fingers crossed that it reveals a big problem. I want a problem! Is that too much to ask??

Sunday, August 12, 2012

Day 6

Images from room 2010... 
 

Update: We were much more successful at controlling Elisabeth's pain yesterday. So that is good thing.

They did another head CT as well as abdominal and everything came back looking splendid. In fact, her ventricles were even smaller than they were in Wednesday's CT. Therefore, neurosurgery is claiming that this is not a shunt problem - and it may not be - but I still have my suspicions.

For the past two days I have noticed fluid accumulating around the shunt. It will get big and puffy, and then about six hours later it disappears. Elisabeth has never had fluid accumulate around the shunt, and I find it hard to believe that it isn't somehow related to the pain that she has been in.

So, as a compromise, the neurosurgery team has agreed to do a shuntogram tomorrow to see if it produces any abnormal results. Is it sad that I am hoping for abnormal results? I want to find a problem to fix already.

Lastly...did you see that Elisabeth's giraffe is on the cover of this month's issue of Martha Stewart Living? (Thanks for bringing that to my attention, Tiffany!) 

Saturday, August 11, 2012

The Giraffe

Look what showed up at Elisabeth's bedside... 
  

The big girls promptly found a good use for it. 

   
I think he needs a name.

Elisabeth update: Yesterday was not good. Elisabeth thrashed in pain and agony for 8 hours straight. They tried giving her morphine - but it didn't do a thing. Two hours later they gave her a double dose. Still, nothing. Eventually her tired body gave in to exhaustion and she drifted off to sleep. And so did I.

The doctors here are still searching for answers. A CT of her abdomen is scheduled for today.

On a happier note, Elisabeth was moved to a different floor yesterday where we have our own room and it is ENORMOUS. Which is good, because I have a feeling we are going to be here for a while...

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