A Visit with Katie

Since Cannon was diagnosed, I have been fortunate enough to have a wonderful support group through a Menkes Moms facebook page. Katie has been a dear friend that knows first hand the heart break of Menkes. She lost her beautiful angel when he was only 19 months old- the same age Cannon is now. His name is James and he would be in 3rd grade this year- the same age Ethan is now. She lives in Oregon so we were able to stop on our way home from our BYU trip and spend the day with them. I have met her before but this is the first time she and Cannon have met. This is actually the first time she has met another Menkes boy. It was such a special day and I am so thankful for her love and friendship. Katie's mom lost a baby at 6 months old, to Menkes, and she was able to be there too. This family is amazing and have so much love to give. Thank you for opening your homes and your hearts to us.My sweet friend Katie.

These girls just got along like cousins. They had a great time. Obviously we don't know if they carry the Menkes gene, but when I look at these three beautiful girls, I can't help but hope their future will have more promise for a cure before they have babies.

We all know Ethan is more than happy to have a friend that will play football with him.

Multnomah Falls

On the way home we stopped at Multnomah falls to take in some scenery, do a little hike and drink some caramel apple cider- all very good things.

Go Cougars!

Road trip!!! We went to the BYU vs. Oregon State game. My parents were nice enough to stay with Cannon at home. Kent went a few days early to do a golf tournament with his brother Kevin. Ethan, Ella and I hitched a ride with the Weavers in their RV and met up with Kent. Here is the group of cougar fans, tailgating at the local church before the game!

Scramblers

Since I've been working my mom to the bone while she's been here, I felt she deserved a good breakfast (I won't mention what time I finally served it to her- poor mom).
There are few things better than eating a delicious breakfast and watching HGTV with my mom, while the kids are at school and Cannon is content in the swing.

Big Hungry Ella

This is the trail I found when I returned to see if Ella had finished her dinner. This girl makes me smile. Once I saw the strawberries, she compared herself to "the mouse in the book with the great big strawberry." I love that she loves books (and strawberries).

Football Star

This face says it all! Minutes before I took this picture, Ethan literally ate grass- look at the right corner of his mouth. He got tackled pretty hard and yet he keeps on smiling and is ready to get back out on the field. This season has been a busy one. Unfortunately, because of Cannon and Ella, I have not been able to make it to the whole time of any individual game. Today I finally got to see Ethan make a touchdown!

Run, Ethan!!!!
Kent is having a great time helping out with the coaching. I find play books all over the house!

What a perfect day for football! (Did I really just say that?)!

Team Lilly Bug

Cannon had another bad night, including a mild fever and some severe episodes of vomiting. I was worried that the plans we had for today would need to be cancelled. Cannon was not going to let a rough night stop him from what he had on his schedule because today was the annual Buddy Walk for the National Down Syndrome Society in our area. We were lucky enough to be part of Team Lilly Bug and Cannon did not want to miss the chance to show love and support for our precious little Lilly.

She learned to walk just in time for the big day!!


Team Lilly Bug!
Lilly is showing off her walking skills here!

The kids remembered this day from last year and how much fun they had. Ella couldn't wait to get her hair colored, do crafts, and have her face painted (not to mention following Aline around all day long).

Cannon and Lilly- best friends from day one- well technically day 20 since Cannon had to wait 20 days for Lilly to be born.
Lilly is so sweet with Cannon. It just makes my heart melt right inside my chest.