California Part 1

A few weeks ago we took a trip to Los Angeles, California

to visit Aunt Jenny, Uncle Kevin, Tristan and to meet Baby Elijah.

We packed A TON of things in one short week, 

so I'm warning you...there are going to be a lot of pictures in this post!

The boys were excited to be riding on an airplane for the first time

Owen loved clicking his seatbelt open and closed over and over

watching the bags being loaded onto the plane

Ethan liked looking out the window

but once we were in the air, he spent most of his time on the Ipad

And Owen spent most of his time walking back and forth

between my seat and Tim's seat and spent little time actually sitting.

Until literally 2 minutes before the plane landed,

when he finally fell asleep on the arm of the seat.

We were finally in CALIFORNIA!

Ethan enjoyed the baggage claim area

and kept trying to pick up everyone else's bags when they came around

and Owen helped Uncle Kevin push our luggage to the car

Pretty soon after arriving, Ethan discovered Tristan's bubble gun

which quickly became the highlight of his trip to California

wrestling on the grass with Uncle Kevin

ringing the neighbor's wind chimes

Owen's first time holding Elijah

On our second day in California we took a trip to meet a girl named Grace.

As many of you know, there are less than 10 people in the world 

with the same diagnosis as Ethan (SCA29) and when he was first diagnosed,

none of those people lived in the United States.

However, about six months ago I spoke with a neurologist at UCLA 

who told me that a child in the LA area had just been diagnosed with SCA29 as well.

And a few weeks before we left for California, I was able to speak with her family

and we made a plan to meet each other while we were there.

Out of the 10 other people known to have been diagnosed with SCA29,

all of them have multiple generations of family members with the same diagnosis.  

Grace and Ethan are the only 2 people to have been diagnosed 

that did not inherit it from either of their parents.

I cannot even begin to explain in words how amazing it was

to meet Grace and her family.

They invited us to their extended family beach house, 

where we spent the morning asking lots of questions and 

continually being amazed at the similarities between Grace and Ethan.

Grace inspired us, increased our hope 

and has already challenged us to do a few things differently every day.

I took this picture after Grace wrote the word "SUMMER" in the sand

and then asked her dad to take a picture.

Ethan's first step into the Pacific Ocean

Ethan and Grace with their families

Grace and her family live about 2 hours from Aunt Jenny,

so we decided to drive the Pacific Coast Highway on the way back.

Owen and Mommy searching for shells

We spent our 3rd day in California at Disneyland!

An AMAZING day for so many reasons --

Elijah's first visit to Disneyland on his 1 month birthday

riding the tram into the park

Tristan with his Nana --

so thankful to Dawn for making this trip possible for us!

sitting with Aunt Jenny and Elijah

One of my highlights of the day --

watching Ethan meet Mickey Mouse for the first time.

He kept nuzzling his nose into Ethan's.

This is the closest Owen would get to Mickey --

as you can tell by his face, 

he's still not too thrilled with these costumed characters.

Tristan with Mickey

meeting Pluto

One of the reasons I loved Disneyland --

this was the look on Ethan's face for so much of the day.

cousins playing

Getting ready to ride the CARS ride with Daddy and Uncle Kevin

Not sure who liked it more - Daddy, Ethan or Uncle Kevin?

Riding CARS with Mommy and Aunt Jenny --

Ethan's continuous giggle while riding the roller coasters 

was another highlight of my day for sure!

Owen took a nap in the stroller...

while Mommy and Daddy took Ethan on Splash Mountain

Elijah napping in his sling

on the carousel

Elijah's first time on the carousel

The teacups were Owen's favorite ride -- can you tell?

All of us on the Peter Pan ride --

when we got on the ride Tim told Ethan and Owen 

that this was his favorite ride at Disneyland.

And since we've been home, 

when anyone asks Ethan what his favorite ride was, he says, "Peter Pan"

Small World is my favorite

I wonder what they're talking about

Owen and Mommy on the rocket

Another highlight was watching the parade.

The excitement on their faces was priceless.

We ate dinner at Goofy's Kitchen,

where they got to meet tons of characters!

Owen kept saying he wanted to meet Minnie Mouse,

but when she came by, he was still apprehensive.

Watching Chip sign his autograph book

Tristan let Dale take a bite of his cupcake

Ethan fell asleep in the stroller around 10pm --

I don't think he's ever done this before - even as an infant.

The boys trying on hats in one of the gift shops

It was a long day for all of us,

but it really was perfect.