Anderson Family

When I look at this picture, my heart swells because I see a family of faces that love me. Ever since we first moved to Sunnyside, they have welcomed us and made us feel at home. They are spontaneous, loyal, loving and genuine. I am so thankful to be their friends. Our family has hit a few road bumps and the Anderson's are there with a listening ear, take out from our favorite restaurant, inside jokes from stupid movies, inviting my kids to play at their house, or comforting me with the power of the Priesthood blessing of comfort and healing. Taking their family picture was a true honor. They are some of the most beautiful people I've ever met, from the inside out.

Boy Scouts of America

I ignored Kent when he told me that only the nerdy scouts where belts and hats anymore. I am glad I didn't listen, because MY boy scout looks handsome in his uniform. I get all sorts of emotional when I look at this picture. My first born is growing up so quickly! He has been looking forward to scouts since they learned about the program in school last year. Here we go...!

Ethan's Birth Day

My parents will never know how thankful I am that they were able to be here for my son on his 8th birthday when Kent and I could not. It is so hard to keep a balance between all the attention Cannon needs without sacrificing our time with Ethan and Ella. My mom and dad took cupcakes to his class and then checked him out of school to go eat at McDonalds. We were home in time for baskeball practice- Ethan's number one activity to do on his birthday. Afterward we opened presents and had the cake my mom and dad picked up for him.

My parents bought the trick candles, so Ethan got laughing harder and harder each time a candle would flicker back on. The giggling made it more difficult each time to blow the candles.

Stomach X-Ray

By the end of this week, Cannon is sick of X-rays, tests and definitely the Barium they keep forcing him to eat. After speaking with the G.I. department and being told that Cannon has lost a pound since our last appointment, two weeks ago, making him no longer on the growth charts. They strongly suggest that a g-tube is the best thing to keep him growing and healthy. I wouldnt' say we had to think about it too long, because ultimately we want to do what will keep Cannon strongest but it is a lot to consider with a surgery being involved. The appointment is scheduled for the Wednesday after we get back from Utah, December 1st. With the upcoming surgery, it was back to Radiology for an X-ray to check his anatomy to clear him for a feeding tube. Isn't his little hospital gown adorable. Kent and I are sporting the latest styles in lead aprons :)

I debated whether or not to post this picture- YIKES! Oh well- such is life. Hakuna Matata!

Swallow Test

Strapped to another cold chair, Cannon waits for the X-Ray machine to see if he is having any problems with his suck and swallow. It is literally a 5 minute test that shows the efficiency, or lack of, his suck and then the safety of his risk of aspiration. It was amazing to watch the X-ray of Cannon sucking the bottle and swallowing it down. For as much as I don't know about Cannon and his body, I am learning a lot more about him than I ever did about Ethan and Ella.

The test told us that he is having problems effectively getting enough food out of the bottle, meaning he burns more calories to eat than he can take in. Once he does get the little amount of food in, he has a significant risk of aspirating which they diagnosed as too dangerous to eat orally. Although, I had a pretty good idea that is how the results would come back, it was still hard to swallow- pun intended. Bad joke, I know. We were referred back to Seattle to meet with the G.I. department (that's one of the last departments at Seattle we hadn't seen yet) to talk about feeding tubes.

Menkes Men

I have had the honor of getting to know some amazing little men through their mother's stories, and modern technology. I am learning more about them each personally and I am compelled to make everyone I know aware of this disease so they can make everyone they know aware of this disease. Future doctors and nurses will recognize characteristics of this disease and a life will be spared from this heartache. That is my prayer. I have added pictures of a few little fighters, along with a sentence or two from their mommies.

Max was diagnosed on May 20, 2010 at the Alberta Childrens Hospital

He will be 1 year old on November 17. He is our little hero, and no matter how rough he feels, he always has a smile for his big brother!

- Canada

Skyler was born December 22nd, 2009. He was diagnosed at at 10 months old. What I love about him most is his smile and his laugh. Even through it all, he can give a big smile and make both of us forget that he has this awful disease.

Adrian was born 11/21/08 and passed on 8/30/09 at only 9 1/2 months old. He was diagnosed at 3 1/2 months old with Classic Menkes Syndrome. He loved to snuggle in front of the fireplace with me and watch movies. When he was feeling well he loved to eat sweet potatoes and carrots.- Texas

Hayden was diagnosed when he was 11 months old in Oct. of 2009. He is now 1 week off his 2nd Birthday and the most special thing about my little angel is 'he was send to us to teach us about the world and to teach me about me' ' he is so strong and an amazing character' - Australia

Miles was diagnosed on December 23rd of 2009 at 7 months of age. He is such a little trooper, he has even smiled during his copper injections. Miles has 2 older sisters and a little baby sister too. - Australia

Miles and HaydenBaker just turned 3 on Sept 24th. He was diagnosed when he was 19 months old. My favorite thing about him is his smile and laugh. He really is the sweetest boy in the world and sometimes I feel bad saying or feeling that b/c I have 4 boys but Baker truly is an angel, I just adore every bit of him and love him to absolute pieces. He makes me feel better every time I am down. - Washington State

Lance March 9, 2000- Dec 28, 2006 His favorite thing was his mommy! He was a very happy child who loved his little sister. - Maryland

Jordan was 22 months old when diagnosed with menkes disease. We decided to start him on the copper histidine injections knowing it probably wouldnt help that much. but i think thats the best thing weve done for him. and the reason why he is still here with us now.

he will be 12 years old in january. we are blessed for every day he is here with us.

a favorite thing about him.... theres soooo many lol. His smile, his laugh, how strong and brave he is. He can light up the room just by smiling :) He's been through sooo much over the years and yet still comes out of it smiling. He is the bravest little boy I know. His favorite things are music, and lights. and when his little brother plays with him. - Michigan

Blaine was diagnoses prenatally and he started copper treatments with Dr. Kaler when he was only 3 days old. He just turned 15- Rhode Island

Family Home Evening

As much as I love being social and keeping busy, today was a perfect day to slow down and have some quiet family time. We began our Family Home Evening with a scripture about baptism, in honor of Ethan's 8th birthday being on Tuesday, and then a lesson on eternal families. We read a beautiful book about what happens when we die. If you are looking on teaching your children about the plan of salvation, it is a wonderful resource. We haven't told our children the severity of Cannon's condition, but thought this would be a good lesson to teach in preparation for that very difficult future conversation.

After we read the book, Ethan and Ella came over to hug me. Ethan said he just felt a "warm squeeze" on his heart and wanted to come give me a hug. We also read a story from the Friend magazine with a great message about missing those who die before us but having things to remember them and help us not to be sad. That led us into our activity of making these special fingerprint necklaces. Even though I am the one that told Kent exactly what he was getting me for our anniversary, I will say this- he was very particular about how perfectly the prints came out. He molded and shaped and rolled and pressed that clay until we had the perfect print for each child. He was determined to make it perfect.

Ella had to repeat hers a couple times- shocker. I didn't get any pictures of Cannon because I was holding him while Kent did the print.

We were going to make cookies together but realized we had used the last egg yesterday. We were visited by two different families bringing cookies by so we were overly blessed with delicious treats! Thank you!

Big Girl "Late-Over"

Ella's first "late-night" birthday party was last night and she looked forward to it as much as anyone would look forward to Christmas morning. She made me tell her how many days, how many hours, how many more Dora episodes before she could go to the party. It was an all girl, pajama, spa, dress up party. Annie was going to help the birthday girl's mom and I had to snap a picture of how darn adorable they were as they were heading out to the party.Could these party guests be any cuter? I think not.

Lego Birthday Bash

Every good party begins with an inspiration for the theme. Ethan was inspired this year by Legos. As I was collecting ideas of how to execute his inspiration, I tried to keep him involved in a lot of the preparation. I showed him different party ideas online and let him choose his favorite. He chose which games sounded fun and helped me decide what the cake was going to look like. In making the cake, Ethan said, "I want to do as much as I can to help you." I love that he wanted to be working right next to me in making his birthday party uniquely him. We stayed up super late last night making his cake into a rectangle, then frosting it then adding the fondant layered strips to try and resemble stacks of legos. I sent the kids to bed and finished the cake, leaving the final circles on top (to make it look like legos) for the morning. This morning Ethan came in and said, "Mom! Come look what I did!" The pride in his voice made me excited to see what happened. He led me to the cake where it looked like someone had poked holes all over it with a straw! Well, that is exactly what happened. Ethan tried making circles on the top to look like legos. He wanted to do it himself and surprise me. At first I was confused- why would he ruin this cake after all of our hard work?! We worked so hard to make the corners sharp, not rounded, we made sure to keep the underlying frosting from oozing between the fondant strips. It had all been demolished... or so I thought.... but then I looked at his face and the expression of pride was so sweet that I smiled and loved that messy little ruined.. no... improved cake.

The boys had a good time building different things as they waited for all of the party guests to arrive.

Guessing how many legos were in the jar got Kent involved because I made him do the counting. Toss the legos into the bucket also got lots of laughs from the kids because it is harder than it looks!

Since legos is all about building it yourself, the party guests got to build their own pizzas and make them look like lego pieces. They were super tasty!

Pretty cool Lego pizzas!

Ethan took a quick break from the party to watch the last 3 minutes of the JAZZ game.
A fun board game called Creationary was a crazy mess of fun, which thankfully Brittany instructed.

As with every party, we finished up with birthday presents and cake. I couldn't have done this with minimal stress without my good friends. I am so tired and satisfied tonight as we celebrated the wonderful eight years that my little man has been in my life. He is such a great kid and I am blessed to have him.
The cake is slowly giving up.

Every guest was able to take home their own box of Legos, I even found a girl box with a pink rider and horse for Ella. Jackpot!

Once the presents were unwrapped, the birthday cake eaten and all of the guests had gone home, I found Ethan playing with his new toys in the living room. There is something to be said for Legos. Although I had all of the teeny tiny pieces that you find everywhere... they are a great toy for kids to play alone or with friends. It beats video games all day, right?