AMC conference 2013

It is hard to sum up in words the AMCSI (arthrogryoposis) conference. We left this last Tues and got back last night from Las Vegas, where the conference was held. The hotel was 20 mins outside of the strip near the Red Rock Canyon which was very beuatiful and hot!
A few of my highlights were:

Meeting several adults with AMC that we only knew virtually throught corespondance, facebook or through books read but had never met in real life. A few where, Tracey, Ward Foley "Scarman" and Luca lazy legs.These adults and others with AMC are really inspirational and down to earth. They live indepdant, full, rich lives that gives me great hope and encouragment for our Luca's bright future.

Watching Luca play tag with Sadie (a three year old with AMC), they play the same way.

Playing in the pool as a family and meetting new friends like Graci (a 7 year old with AMC that Luca loved playing with all weekend!)

Talking with parents and watching all the kids play togehter and dance!

I come away grateful for what Luca can do and the LITTLE amount of surgery he has needed.

Talking to a suregeon about a possible muscle transfer for Luca whe he is seven.

Listening to Scarman's inspirational talk.

Straws were everywhere.

AMC talent show.

Luca said, "I use to think there were only a few people with arthrogryposis, now I know there are A LOT of people with arthrogryposis!"

Looking forward to next year in the Twin Cities, MN!

 The bathtub in our hotel room, a big hit

 The pool

 Luca in the desert 110 degrees

 John and Luca jumping into the waterfall at the pool

 Luca and Graci

 Luca found springers

 Luca and Sadie at the talent show

 Luca and John traded hats on their hike

 Luca and Graci

 Luca and Luca

 Ward Foley and Katie

 Sadie and Luca

 Luca and Sadie coloring

Juliette ready to hit the pool

camping

 Luca looking like a teenager to me on the drive there (he only listened for five mins.)

 The crew

 Beautiful!

 Fun around the campfire (where is Kimi)

Monica and I

Upcoming trip

Hi Blog readers....sorry I haven't posted in a while. Life has been busy with the kids, work- VBS (KSA) coming up next week and 100 preschoolers signed up, and my parents being here! It has been wonderful to have Popeye and Cozy Nana here! Luca is grinning from ear to ear all day long and Juliette keeps us all on our toes with her energy and love for adventure!
John, Luca, Juliette and I are going to Las Vegas on Tues. to the Arthrogryposis Annual Conference. We are staying (and the conference) is at a hotel about 20 mins outside of the city surrounded by a golf course. We are really looking forward to our time there.

Luca had a great preschool end of the year celebration. We are missing that yellow school bus and his class but he has gotten to do some other fun things with my parents and attended another church VBS last week.

We went camping at Lake Chelan last weekend with a few friends. I will post pictures soon! This was also a bit of a last hurrah with Jess and Kimi as they will be moving to Rwanda at the end of July. We miss them already:) and don't want to say good-bye, but their time in Seattle is quickly ending. It has been so special to live close by to them for the last 5 years!

Luca and Layna

Luca at School with his friend Sabine and other classmates!

 Juliette LOVES dogs, and all animals but esp. dogs. She tries to pet every dog she sees! I think she got that from Aunt Betsy!

 The lastest Jamie, Alicia, Katie, Jessica children picture

 Luca and his wonderful Teacher Jennifer at his preschool celebration!

Luca on the last day of school!

Last Buddy School

 Sensory Table

 Containing Juliette

Maya wearing her chef hat craft 

    All the students and teacher Jamie during circle time

Luca and Yami with their tasty snack!

 Many Fridays mornings this year were spend in a wonderful way at Jamie's preschool, as Luca liked to call it "buddy school" We really enjoyed making new friends and spending time learning together! Thank you Jamie for your creativity and energy! We enjoyed being apart of it!

My Dream

This event took place a few weeks ago:

I had a dream the other night that I had arthrogryposis. I told Luca about my dream. And said, "but mom, you don't have arthrogryposis. You wouldn't like to have it. It is no fun to having arthrogryposis." I said, "why is it not fun?" Luca said, "because I can't raise my hand up to my shoulder." I said, "I am really sorry you can't do that Luca." And we both cried.
Later that night, I shared the story with John, and then I wept. It brought me back to the pain I felt when I first found out about Luca having AMC. It felt like a fresh diagnosis because it was coming from Luca. I wanted to cry all night long, just sitting in the pain of how sad it is that he has limited muscles in his arms, and feet.
He is expressing his thoughts, feelings, complaints about having AMC often. Today he said, "I wish I could just wear socks and shoes and not AFO's."
Ever time I dress him and feed him, watch him fall I wish so badly that he didn't have arthrogryposis. But he does and I pray that he and all of us will not only learn to live with it but live fully with and into this calling God has for Luca's life.

Luca dancing

http://www.youtube.com/watch?v=vQb_EZ8LYrU&feature=youtu.be

Mother's Day

A big Happy Mother's Day to our mom's! And Grandma's-We wish we could have been with all of you too today!

I had a special day, work in am, while John and Luca made me a cake (the chef pictured above), a delicious shrimp lunch made by John, then we went to the recreational pool this afternoon/evening

for a lot of fun! Luca is doing an amazing job swimming and Juliette loves the water.
Luca also made me this special flower (pictured below) at school for mother's day and hid it in his room till this morning. So sweet!