Monday, April 30, 2012

Say Cheese!

I love cheese. In fact, cheese is my favorite food. Remember that moment in Florence? Ahhh...it was both the most brilliant and devastating moment ever. Brilliant because I didn't know cheese could taste like that, but it did. And devastating because I knew I would never taste such perfect cheese again (at least not until the next time I find myself in Italy). 

Yes, I love cheese. So you can imagine how thrilled I was to go with Jennifer to a cheese-making class on Saturday afternoon. Me, making cheese - it was just meant to be...
 
 
   

I sliced the cheese in half and was just about to taste the fruits of my labor...and then I received a text: "Come home. Elisabeth needs to go to the hospital." 


To be continued...

Friday, April 27, 2012

Rock Candy Mountain


As you may already know, my grandfather, Claude Coats, was a Disney artist and imagineer for over 50 years. Indeed, he helped bring to life many classics, including, Snow White and the Seven Dwarfs, Cinderella, Pinocchio, and Peter Pan. He also helped build Disneyland into what it is today - designing fan favorites like Pirates of the Caribbean and The Haunted Mansion.

But there are also the hidden designs; whimsy's of my grandpa's imagination that never became reality. I can remember being a child and seeing the drawings for a Candy Mountain that never came to be - but I always thought it would have been so fanciful!

Fast forward to yesterday evening. My mother-in-law, Susan, forwarded me an article from Disney Parks Blog, and lo and behold, they are using that design!!! I can't believe it!! There is a new candy store opening on June 15th in California Adventure called Trolley Treats - and in the front window will be a model of my grandpa's original Rock Candy Mountain! Isn't that just dandy?!

I can't wait for August to roll around so I can go see it in person!!

(Too many exclamation points in this post?!!! Perhaps....but this is an exclamation point kind of occasion!!)



And visit ClaudeCoats.com to learn more about my grandfather...and perhaps buy a print or two.

(Then you and I could have matching artwork hanging on our walls, wouldn't that be fun?)

Wednesday, April 25, 2012

Easter Re-Take


Since somebody very important was missing from my Easter pictures I decided to do re-takes this past Sunday before church.

 
   


There, that's better - all three girls in their Easter best! 



And now...a video of this little photo-shoot:

Tuesday, April 24, 2012

Thoughts on Life - 5 Years Later



This is a day of reflection for me; reflecting back on where we started...and where we are now. On this day in 2007 my life forever changed as I heard the word hydrocephalus for the first time. Those first days and weeks following the diagnoses were hard; I physically ached from a broken heart.

Up until the happenings of this last month, I considered that the most difficult time of my life; learning that my unborn daughter had an incurable brain disorder. In a matter of minutes, what I expected in life was gone and I was heading down a path that I had no desire to walk.

I remember clearly being advised to abort the pregnancy. "Do you want her to live a life of handicaps and surgeries?" my doctor asked me. There was no question in my mind whether or not to continue on, I knew that her life was not mine to take.

While we were in the hospital a few weeks ago I thought about that doctor. "This is what he meant," I thought to myself as I watched Elisabeth writhing in pain and agony. He knew that if I chose to keep her - and if she were to live - that these were the situations we would be forced to face.

But even so - life is worth it. Life is always worth it.

Yes, that doctor was right. Elisabeth has many handicaps and has found herself in the operating room plenty of times in her short life. And obviously the pain that she endured over the course of those three weeks was a trial in its own right. But regardless, the beauty and good in her life has far outweighed the hardships.

Life comes with bumps in the road. For Elisabeth, it's her medical frailties. Others may find themselves needing to overcome emotional, physical, or financial problems. There's never a shortage of hardships in life...but the key is to be stronger than them; to overcome them; to learn from them. And when you survive those trials, oh how sweet life is! Indeed, adversity offers us the perspective we need to enjoy the beauty that is all around us.

The past five years have been - without a doubt - the hardest of my life. But I can also assure you that they have been the most rewarding as well. Donald and I are honored to be Elisabeth's parents. On a daily basis we look at her in awe and wonder how we got so lucky? She is an angel on Earth, with a spirit perfect and pure. Her life is filled with medical complexities - yet she reminds me daily of the simple joys of life.

Five years ago my life changed...and I will forever be grateful.















My friend Lee Ann came to my house on Friday afternoon and took these pictures of Elisabeth. What a sharp contrast they are to the photographs she took in the hospital a few weeks back! Those pictures were solemn...yet spiritual; perfectly capturing a time of uncertainty for us. And these...well these are full of vibrancy and color; a representation of Elisabeth's love for life and the beautiful spirit she brings to our family. Yes, Lee Ann has a gift for artistically - and accurately - photographing life.

Thank you Lee Ann! I am grateful for your friendship.

Please visit Lee Ann's website. Click here.

And thank you to my mother-in-law, Susan, for the beautiful top you sewed for Elisabeth!



Monday, April 23, 2012

A House Party

Every year in March we throw a birthday party for our house...a celebration of the day we purchased our home back in 2005. This year our party got pushed back a few weeks (for obvious reasons) - but better late than never, right?

So we invited family over and celebrated 7 years of owning our beloved home. Some items on the menu: grilled kabobs, watermelon, oranges, and strawberries...






[Donald, the grill master.]




[Susan and Jennifer.]


[Elisabeth says, 'now this is the good life'.]


And then it was time for our first fire of the season. Donald saved our Christmas tree just for the occasion; it smelled like the holidays:


['Oh, Christmas Tree, Oh, Christmas Tree!']




[Lorelai, roasting her marshmallow to perfection.]


And finally...

Donald and I teeter-tottered into the evening. I'm pretty sure teeter-totters are the best toy ever invented.








Happy 7th Birthday to our House!
We love our little place in the world!!


A look back:

Our home's 6th birthday
Our home's 5th birthday
Our home's 4th birthday
Our home's 3rd birthday
Link

Friday, April 20, 2012

Lennox-Gastaut Syndrome



During our first few days in the hospital, Elisabeth was diagnosed with Lennox-Gastaut Syndrome (LGS). This is a severe and rare form of epilepsy that is typically very difficult to control (which explains why we haven't had any success with the millions of meds we have tried her on).

So they decided to start Elisabeth on a new medication called Onfi. Onfi has only been available in the US since the beginning of the year and is targeted at individuals with LGS.

Now for the exciting news...

Ever since starting Onfi, Elisabeth has been

SEIZURE FREE!!!!

Seizure Free!!! Can you believe it?! I can assure you, it's hard for us to believe...but it's true! Normally, Elisabeth has seizures every hour of the day. And now, nothing. Not so much as a little jerk.

It's amazing. Absolutely amazing. This is the first time since Elisabeth was 6 weeks old that we have seen her seizure free.

So I say, three cheers for Onfi!!!

Hip hip hooray!
Hip hip hooray!!
Hip hip hooray!!!

Thursday, April 19, 2012

Normalcy



I've been enjoying a week of normalcy; of picking the girls up from school, and grocery shopping, and trying to find missing ballet shoes (couldn't find them, by the way).

I've always loved normalcy (or simplicity) and after the events of the past few weeks I am relishing in it even more.

Here's hoping things stay like this - for a little while at least.


***Exciting news tomorrow.

Wednesday, April 18, 2012

Queen Elisabeth has the Giggles

Elisabeth's sense of humor is back!

It's been months and months and months since we've been able to make her laugh. I remember when she was younger (2-3 yrs old), she would start laughing whenever anyone would sneeze - so of course we would purposefully make sneezing sounds all day just to get her giggling.

Sometime in the last year she stopped laughing much and things like sneezes no longer amused her. We are wondering now how long that original shunt had been 'bad' for - perhaps it was irritating her and thus we saw changes in her behavior?

Regardless, a few days ago somebody in our house sneezed - and lo and behold, Elisabeth laughed! She did, she did!!! So we've been [pretend] sneezing at her ever since. Oh, how her giggle just lights up the world!





Tuesday, April 17, 2012

She's Back!



Last summer, when I was injured, my sister moved here to help me care for Elisabeth (since I couldn't lift anything heavier than a soup can). At that time we started a little tradition of cheering for Elisabeth whenever she would wake up from a nap, or when she would get home from school.

For example, the big girls and I would be in the family room and when Jennifer would carry her in after she woke up we would shout,

"She's up!!! Elisabeth's up!!!"

And begin whooping and clapping.

Or...if she was just getting home, we would start celebrating as soon as Jennifer carried her through the front door,

"She's back!!! Elisabeth is back!!!"

And we have kept it up all these months. Oh, how we celebrate...it's like a ticker tape parade! Elisabeth smiles and bounces with excitement at the shouts of joy.

Can you imagine how that must boost ones self-esteem? Having a group of people burst into applause every time you enter a room? What an awesome feeling it must be - and that's exactly why we do it. We want Elisabeth to feel like the most important person in the world.

Which leads me to this past Thursday evening.

As we pulled into our driveway after the two hour drive home from Spokane (and after Elisabeth's 23-day hospital run), there was a huge sign on the garage door that read,

She's Back!!!!

And - as you can imagine - when we carried Elisabeth across the threshold, it was our biggest celebration yet. For minutes on end we stood there cheering - and oh, you should have seen the look in Elisabeth's eyes! After what had been the most exhausting and painful experience of her life, she was home, and things were normal, and her family was gathered around her celebrating her return.

It was a moment that will forever be sealed into my memory; one of those moments where you think, this is what life's all about.

Monday, April 16, 2012

My Pharmacy

Let me introduce you to Elisabeth's 30 day wean...


[That's some serious medication right there!]


[All of Elisabeth's other daily meds. Some are twice a day, some three times, some four. It's a nightmare to keep track of.]


In other news...

We are seeing miraculous things from Elisabeth. Miraculous, I tell you! But I am afraid to say too much for fear that I will jinx it all.

I'll give it a few more days, and if things are still as miraculous as they are right now, I will tell you all about it. Deal?


[Ever since Elisabeth started her wean from the morphine, she likes to keep that left hand up behind her head. Strange, huh?]

[Do you see how good she looks?! Yes sirree, things are lookin' up!]

[Donald looks pretty darn good too. But then, what else is new?]

Friday, April 13, 2012

The Final Tally

12 doctors
6 CT scans
7 sets of x-rays
2 ultrasounds
2 brain surgeries
1 PICC line
1 EEG
and
23 consecutive days in the hospital.

***
Now that's going to be one heck of a bill!



But who cares, because...



Queen Elisabeth
is home!!!



The details:

Elisabeth is not herself yet. Not even close. However, her medical team thought that she was stable enough - and that I was trustworthy enough (yay!) - to finish her rehab program at home. So here we are! And goodness gracious, you should see the load of meds I have to finish off the 30 day wean! I'll have to post a picture of it.

Anyways, if you're looking for me, I'll be spending the day at home.

I like the sound of that.

Thursday, April 12, 2012

Soon Enough...


[The porthole window in our room.]

At the front of Elisabeth's hospital room is a porthole window that faces the nurses station. I love it for its nautical charm as well as the peek it provides to the outside world. I see the hustle bustle of the hallway; nurses hurrying here and there and doctors making rounds. And of course I watch other patients come and go - you would not believe how many neighbors have come and gone next door during our two and half week stay in room E307.

In fact, mounted on the wall outside our room, just in perfect view of our porthole, is a computer screen. And on that screen is a layout of the floor showing all the rooms. Ones that are occupied are lit up in bright green while the vacant ones remain white. It has become a favorite pastime of mine to watch the screen throughout the day; see who has come, who has gone; to notice when things are really busy...and when there are only but a handful of other kids.

So yes, I enjoy our porthole and the connection it has given me to the outside world, but I have come to love inside our little room as well. And do I dare say that it feels rather homey? You see, I have made a point to create an atmosphere of healing within these four walls. I surround Elisabeth with her favorite toys and familiar blankets. And I have music going continuously - and not just any music, but calming, soothing music. Lullabies, mostly. And some classical guitar.

Yesterday a woman knocked and entered our room with a handful of towels to restock our linen drawer.

"I love coming in here," she said. "It's just so peaceful."

I thanked her and explained my intentions: to make sure that Elisabeth felt calm and safe. I haven't even put the TV on, not once, because I don't want a bunch of outside noise to clutter Elisabeth's head during this time.

I went on to tell her how my greatest goal in life is to ensure Elisabeth's comfort - I don't even put jeans on her - only comfortable knit leggings or loose flowy dresses.

"I knew from the beginning that she wouldn't be able to do a lot, so I decided that I would just focus on making her life as comfortable and happy as possible," I told the woman.

"And it looks like that makes you happy too," she said.

I smiled. She was right. Caring for Elisabeth, protecting her, making sure that her every need is met...those are the things that I live for. And oh, how happy it makes me when I can achieve that. But that is also what has made these past weeks so difficult. To know that there was something out of my reach, something that I couldn't control, something that I couldn't make better. That was hard. So, so hard.

But soon enough that will all be a distant memory. Soon enough we will be home. Soon enough she will be well again.

Soon enough.

A Glimmer

Yesterday, the moments of calm outnumbered the moments of distress.



And for the first time in weeks, I could see a glimmer of the real Elisabeth.

We're almost there...

Wednesday, April 11, 2012

Faces of Withdrawal

Drug addiction is nasty stuff, let me tell you. As I have sat here and watched Elisabeth suffer through inevitable withdrawal symptoms, I can't help but wonder why anyone would ever inflict this upon themselves purposefully?

My advice? Stay away from drugs, people.

I think Elisabeth should be the new poster child for D.A.R.E. with a caption that says,

'Don't let this happen to you!'




As a mother, this is not easy to watch. It's meant some sleepless nights for both Elisabeth and myself.

Dr. G. spoke with me yesterday and suggested that I go to a hotel for the night so that I could actually get some sleep. Then he went on to tell me that Elisabeth was going to crash and she was going to crash hard, there really wasn't an easy way around it - and perhaps I wouldn't want to see it happen.

A nice thought...but he is forgetting one detail...I am her mother.

Abandon her like this?

I don't think so.

Tuesday, April 10, 2012

Answers At Last


[I think that Elisabeth's new incision and sutures
look like a caterpillar crawling across her head
.]


Where do I even begin?

So much has happened, so many little details. I'm quite sure I could write a book on all the happenings of the past three weeks, but instead I will try to make this as simple as possible.

The shunt that was placed on March 20th wasn't - shall we say - compatible with Elisabeth (I will spare you the technical details). It was indeed the source of the severe pain that Elisabeth experienced over the course of ten days.

The new shunt that was placed on April 2nd has resolved that problem. It is working beautifully and the original pain is now gone.

However, we now have a new problem - Elisabeth is addicted to the morphine that was continually pumped into her over the course of those ten days when no one was quite sure what was wrong. And let me tell you - she is a great example of why we tell kids to stay away from drugs. Oh, how miserable she is! She tosses and turns and moans and groans. Sometimes she just seems downright frantic - her body has become dependent upon drugs and she is suffering severe withdrawal symptoms if she doesn't get them.

Yesterday we began the weaning process. We have a careful plan in place to take her off the morphine slowly - and hopefully with as little discomfort as possible. This could take a while - or she could surprise us and respond quickly to her 'rehab' program. We'll just have to take it one day at a time.

The good news is that we finally understand everything that has happened. We finally know that the shunt was the cause of her original pain. We finally know that the second shunt they placed last week has relieved her of that pain. And we finally know what is causing her current state of discomfort. Oh, how good it feels to finally have answers; to finally understand what the cause of her torment was/is.

Finally, she is on the road to recovery.

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