Heading Home from Georgia

Elisabeth has been struggling this week. Before we left for Georgia, Elisabeth was having 'episodes' once or twice a day for an hour or so. But with each day that has passed she has gotten worse and worse. She screams and cries and thrashes for hours on end with no relief - for as much as 10 hours in a row.

We had her in a hospital here in Atlanta but there was nothing they could do for her; she needs to get back home to her medical team in Spokane. So they have armed us with a bottle of valium and we are going to board a plane today and hope to make it back to Washington with little or no incident.

Wish us luck. I'm nervous about flying all the way across the country with her in this condition. And I'm even more concerned about what's going on with Elisabeth.

Here is a small sample of what she has been experiencing:

Home and Abroad

 

I took this picture yesterday when I was dropping our dogs off at the boarding kennel. As I looked at the horses and the landscape and the blue sky, I thought about the fact that while I love to travel and see the world, I also love my little place in it. 

*** 

 This morning we arrive in Atlanta. 

 Stay tuned for travel updates!

Brace Yourself

Elisabeth has been having trouble sitting lately because her scoliosis has gotten so severe; she just kind of tips over. So yesterday she got a back brace. The orthopedic surgeon said it won't stop her spine from doing whatever it is that it's going to do...but it might give her enough support to stay upright. (let's hope)

I love the little hole for her g-tube! 

And it tastes good, too:

In other news: the neurologist took pity on us and gave Elisabeth a prescription for Ativan for our trip to Atlanta. Thank goodness. I should have everyone on the airplane sign a thank you card to him.

We will be flying over night and arriving in Atlanta in the morning.

 Expect an (on the road) Home Show or two along the way.

Ciao!!

Packing and Paper Cranes

There are a million things that have to happen today.

Most importantly, I need to talk with Elisabeth's neurologist in hopes that he can prescribe her a sedative or something - because she is going crazy (literally). We had hoped that her behavior this past week had been due to shunt problems, but we had her shunt reprogrammed on Friday and she has only gotten worse (screaming, crying, thrashing, etc.).

I am going to beg the neuro for something - anything - to calm her down. Because tomorrow we have a cross country flight to Atlanta and there is NO way I can travel across the country with Elisabeth behaving like she has been.

So keep your fingers crossed that Dr. R can come up with some miracle med, okay?

In other news, remember all those paper cranes? Well, here is phase one complete: 

 

  

Alexandra has made a gazillion more cranes even since we strung those ones together...so I imagine we will have garlands of paper cranes hanging everywhere by summers end. Want one? 

Okay, I'm off to pack!

Paper Cranes

The girls and I are working on a special project - and it includes making a gazillion paper cranes.

It's going to be spectacular when it's done. 

 

Yesterday we went out to the craft store and bought more paper. I am lovin' these prints: 

 

Stay tuned for the completed project!

Kabobs

I find that the best way to make a kabob is with a mushroom at either end; it works as a stopper to hold everything in place.

 

 Once the kabobs are fully assembled we throw them on the grill...

 ...and serve them up alongside a pile of rainbow colored plates:

 

At least that's how we do it in these here parts.

The Ballet Recital - 2012

Typically the idea of an outside ballet recital in mid June is delightful. Typically we pack a picnic and eat it on the grass while watching all the dancers perform. Typically we are wearing flip flops and sunhats and hoping to find some shade underneath a tree.

Typically.

But this year...not so much.

It was freezing.

And rainy.

And windy.

Elisabeth and I looked like this the entire time:

And because of the frigid weather - and the fact that I was holding a very unhappy four-and-a-half year old - there is not an abundance of pictures. Gratefully though, Donald ran up and snapped a few with his phone.

 

 Brrrrrr...

Hello, Summer.

Today feels like the first official day of summer; the first day we all get to wake up and have nowhere to go and nothing to do. I'm pretty sure that we will spend the day baking cookies and watching I Love Lucy. That's the way the summer is supposed to be.

 

Last Friday when school let out for the summer:

   

 *** up tomorrow: The Ballet Recital

The Last Day of School!

To keep up with tradition, I thought I would post video's of Alexandra and Lorelai on the last day of school. They had a fabulous year and they both tested as being proficient in Spanish. Woohoo! Good job girls!

Lorelai Leigh ~ 1st Grade

[Sorry the sound is kind of off.]

Alexandra Louise ~ 3rd Grade

Happy Summer!

In Memory of Ray Bradbury

My favorite author, Ray Bradbury, died two days ago. I've been a big fan ever since I read The Martian Chronicles in the 7th grade. Something about his writing just captivates me. 

Okay, now for a little confession: my favorite of his short stories is All Summer in a Day. Now, I do realize that it is a very sick and twisted story - but I love it, I do. Jennifer thinks I am nuts, "that's the most depressing thing I've ever read," she has told me (many times). 

To each their own, I say.

 My favorite novel is Fahrenheit 451. Hello, genius. Honestly, he wrote it in 1953 and predicted so much of how life is for us now - even reality TV. I am so in love with Fahrenheit 451 that I actually read a study guide about it two months ago so that I would better understand the different themes (I'm obsessed with it, it's true.). 

Best. Book. Ever. 

Anyways, all of this to say how deeply saddened I was by his passing. He had a true gift and the world has lost a great writer.

 

Matchy-Matchy

When I was young and daydreaming about being a mother, I would imagine my children in coordinating outfits. And - for the past 7+ years - I have made an effort to dress them alike as often as possible. Lately, I have been thinking about how they are getting older and probably won't let me match them much longer. But last weekend we went out shopping and - as always - I made them coordinate:

  

I figured it might be my last summer to get away with it; sisters can't wear matching clothes forever. 

Fast forward to yesterday afternoon. 

Jennifer and I went out shopping while all my children were at school. When we left the mall we had this in hand: 

 

  

[I immediately fell in love with this print. Hot air balloons - how whimsical is that!?] 

It was then I realized - 

 sisters can dress matchy-matchy forever.

Oh, happy day. 


***And a very happy birthday to my mother-in-law, Susan!

All Smiles

Look at this face: 

 

This is the face of a little girl who is still seizure free. Who has stopped screaming. And who has given up her habit of head banging. (All thanks to the miracle of modern medicine, of course.)

Golly gee, things are lookin' up around here!

p.s. I can't begin to tell you how glad I am that we have have the screaming situation under control. That would have been a nightmare on a cross country flight. 

p.p.s. Flight leaves two weeks from today! QE (Queen Elisabeth) is soooo excited to see her hydro cousin, Claire. 

p.p.p.s. She's pretty excited about seeing her hydro aunt and uncle, Amy and Brad, too. But mostly Claire.

Call Me Crazy

It was a typical weekend. 

 For example: 

I went to yoga...Donald cleaned out the van...We stocked the pantry and fridge...Had Kabobs for Sunday dinner...And Elisabeth pulled out her g-tube.

  

[G-tube in Elisabeth's right hand. Her mid-day-meal coming out her stomach. Delightful, no?]

No worries this time around as I was holding her when it happened. It was quite humorous, really. All of the sudden I looked down and she was gripping it tight in her fist while stomach acids and her mid-day-meal of pediasure came pouring out of the hole on her belly. 

 Jennifer was scrambling to get the necessary items so that we could get the g-tube securely put back in said hole. 

That's when I said, 'not so fast, we have time for a picture'. 

She thought I was crazy. 

Maybe I am.

Growing: Part V

Happy June 1st! 

I have been diligently growing out my hair in accordance with my New Year's goal...and I am proud to announce that it is at a great pony-tail length for summer. That will be perfect. Especially when we head down south in a few weeks; pulling my hair up and back will be one way to relieve myself from the heat and humidity.

[June]

A look back:

[May]

[April]

[March]

[February]

 

[January]

Not too shabby, huh?