Corona virus

Well, since last Thursday we've been battling sickness. On Friday Bellsy started requiring more support than we could provide so we came to Primary Children's. She quickly deteriorated so we decided to place an endotrachial tube. The tube allowed the vent to breathe for her and permitted her sedative type medication that she can't normally have. It was much needed rest for her. 

She spent Friday through Monday on the tube. The next challenge was extubation. See the risk with placing a tube in SMA Type 1 kiddos is that sometimes you can't take the tube out. At that point, there are not many options. Luckily, she did really well coming off the tube today. More recovery time on bipap and we will be out of here!

The Climb

Our days around here are mostly bright; filled with sunshine smiles from a tiny girl and the laughter of our growing boy. Some days though, are darker. There are days where I find it hard to see through the clouds. The clouds? Fear. Fear for the life of our sweet Ellie. What kind of future will she have? What if we can't save her? Yes, if I allow it, those thoughts do creep in and it feels like our whole world could crash at any moment. Then, beautiful things like this happen...

My boy treks up the mountain with little sister in tow. He is not thinking of how hard this road is going to be or whether or not he can make it to the top. "Ellie is having so much fun, Mom. Look at her face. She loves the trees and I want to show them to her." Wow. What perspective! You are right, son. There is so much beauty right now, in this moment. Right now, there is not a care in the world. Only the bright smiles and enthusiasm of two of the most wonderful, inspiring people I have ever met; our kids.

"We're at the top of the world, Mom!" Right again, little man. And isn't it beautiful! I am so thankful for our son's outlook on life and the joy both of our kids experience in the little things. They are not so little, after all. They are what matter most. No mountain is too high. The journey and beauty along the way make climbing any mountain possible and so worth while. These little things make for such beautiful experiences and I am so grateful.

Everyday Heroes

Ellie has been sick with a virus. Any sickness is an obstacle for SMA babes. She doesn't have the ability to cough. She isn't able to swallow or handle her secretions on her own. Her airways are easily compromised by these things. Yet, she is so strong. Everyday she faces physical challenges but her beautiful, brave spirit never waivers. Her joy for life is never lost. Her smile always shines so brightly. She is a hero.

The little things in our daily life are not so little. My little boy is a big, brave soul. His calm demeanor lends me a hand daily. His love for his sister is so pure and so beautiful. Something I feel so privaledged to witness. He brings me back to the moment; helps me see through the fog. He is 5 years old and he is a hero in my eyes.

My amazing husband takes all of this on in stride. He sails beautifully through the eye of the storm. He keeps the peace and calms my nerves. We are all in excellent hands with him by our side. He is no ordinary man but an everyday hero. 

I am amazed by so much beauty and clarity on this journey. We have witnessed and felt the love of so many everyday heroes. Your helping hands and kind words are giving us strength. We have been inspired to live a life where every moment is precious. Every day is a gift. There is so much peace and power in living for now. It is all we have and it is more than enough. Here's to making every moment count in 2014! 

What's next? You guessed it; our New Years photo overload begins now. :-)

We celebrated the new year in style at the Little America Hotel. A big thank you to my amazing brother, an excellent uncle, for the gift of beautiful, cherished memories!

A little business took place.

Along with a whole lot of fun. Swimming in the winter? You are going to need to complete the outfit with snow boots.

Ellie took her first swim in a pool.

She wasn't thrilled about the temperature of the water.

Swimming in the bath tub is still preferred. With her big brother?  A first and a huge bonus!

We enjoyed lots of visits from grandparents. Big smiles with every one.

Ellie enjoying her view on New Years Eve.

I just love her eyes in this picture! Along with everything else, of course.

Being an SMA dad by Kale Stevenson

When my friends, dads themselves often times, first hear about little Ellie there are a few typical responses; "I'm so sorry" "I can't even imagine..." "How do you deal with something like that?" Basically, a flurry of questions that don't have easy answers. In the first few weeks these thoughts relentlessly haunted me. 

Ever since October 29, 2013 I've been determined to answer these questions. How do I give this little girl the best life she can have? How do I suppress my sorrow so I don't contaminate her happiness? How do we keep our family strong in the face of such a horrific diagnosis? 

In spite of daunting circumstances a few aspects bring me great peace. First, Ellie couldn't have a better Mother. Kate was born to be a fantastic mother and shines under the enormous challenge of caring for an SMA baby. Second, Ellie has a very loving and compassionate brother. Third, we have an exceptional support network consisting of family, friends, doctors, nurses, neighbors, employers, etc. We are forever grateful for all you've done for us.

I've always considered myself a lucky man. From my beautiful wife and awesome kids to all my friends and family. I'm extraordinarily fortunate. Ellie is no exception. She has brought us nothing but love, beauty and joy. She's taught me more about myself than I ever thought possible. If Ellie were to leave us and my family were to fall to pieces that would be on us, not her. She's only ever brought us love and joy.

So here is how I cope with 'all of it'... I lean on my wife. My wife leans on me. We take advantage of the support offered. We're not afraid to ask for help. We enjoy every day. We give back. We learn, love, hold, kiss and be inspired. We enjoy the clarity and keep the perspective. 

Most of all we enjoy our beautiful little angel every single day. Her pure love is all we need. What else matters?

Celebrating the Season

We have had such a wonderful time celebrating this year! Lots of quality family time has been spent and lovely memories made that we will cherish for a lifetime. Picture overload of our Christmas begins now. :-)

Right before Christmas, we got a great snow storm. Daddy and E built this awesome snow fort.

Grandpa had a special celebration at his house the weekend before Christmas. Tamales were delicious and the company was even better!

 

We went to see great, great Grandma Mel on Christmas Eve. What a special visit!

 

Then off to Grandma and Grandpa D's we went. Lots of fun and laughter.

In honor of Ellie, we donated and gave family members NEVER GIVE UP apparel from the Gwendolyn Strong Foundation.

In their new Christmas pj's. Ready for Santa!

Santa came!

A special gift from Daddy.

Grandma and Grandpa came to visit.

Last but not least, we enjoyed dinner at Grandma Lizzy and Grandpa Dane's house.

Christmas was made extra special by this little girl. We celebrated her half birthday! She is so loved and we are so very lucky to have her!

Her first candy cane.

Thank you for stopping by and continuing on our journey with us. Your support means so much. Tell someone you know about this blog or Ellie's story today. As always, we send all our love and appreciation.

In our Hearts

Today and everyday, Gram lives in our hearts. She lived a beautiful life and passed away in May of pancreatic cancer; 6 months after being diagnosed. She inspired us all in so many ways. She taught us to enjoy the moment, forgive and to love unconditionally.

This time of year was always made special by our dear Gram. We are thinking of and celebrating you today. Remembering your gentle voice and warm smile. Your delicate hugs filled with love. The way you welcomed us with open arms. Your decorating and amazing taste, the wonderful smells of your kitchen and beautiful table settings. Your laughter.

As I sit here with a smile and tears in my eyes, I realize just how happy she made all of us. We live and love to the fullest in honor of you, sweet Gram. We cherish every moment together. Thank you for the beautiful memories. You are always in our hearts.

Grandma and Grandpa's Christmas cottage, Christmas Eve 2012.

One of E's favorite things to do with Gram was read. She always had time to cuddle up with him.

Gram loved all of our babies. She had a magic touch. This is baby Emery, Ethan and Ellie's cousin.

All of us together, February 2013. Even baby Ellie is in my tummy. :-)

A little Christmas Magic

Grandma Lizzy knows Santa! Somehow, she was able to arrange a special visit to our house last weekend. There is nothing like seeing your child light up with joy seeing this sweet spirited man.

This time of year is always special. A lot of cozy nights at home sitting around the Christmas tree. Story telling, watching the snow fall, Christmas lights, and lots of time with family. Christmas fills every heart with love and joy. It is magical, just like Santa. We believe in the spirit of Christmas, do you?

We also had a Christmas family photo shoot that day, thanks to our wonderful neighbors. Enjoy a sneak preview:

We want to wish everyone a very Merry Christmas. Lots of love and warm wishes from our family to yours!