CMN Hospitals

This week (March 20-27) is Childrens Hospitals Week. I thought I would take a minute to talk about Children's Miracle Network and how important it is. A year and a half ago I didn't know a lot about this incredible organization and how much it would come to mean to our family.  Children's Miracle Network raises money for 170 member hospitals across the US and Canada. Donations stay local and help with medical treatment, equipment, research, and other programs in the hospital.  62 children enter a CMN hospital every minute!

When we were asked to speak last year at Dance Marathon, I took some time to learn about CMN and was blown away. We have since spoken numerous times and I continue to be blown away by the people I meet and all of the ways CMN helps local hospitals. For us, Cook's Child Life Program and our beloved therapy dogs are funded through CMN. But I think the most important aspect for me is that it impacts everyone.

As a little girl and through the years my biggest dream was to be a mother. I had no idea that this is what motherhood would look like for me! I love my little family, but this is not exactly how my childhood fantasies looked! Whether you are a family like mine with a genetic condition, a family who has an accident, or a family who receives a cancer diagnosis, CMN helps us all. Sickness and accidents can impact anyone of us and bring us to the hospital. So many organizations help one specific disease or population. I love that CMN is for everyone. If you ever have the opportunity to support Childrens Miracle Network, please do. The staff, the celebrities, the volunteers are some of the most selfless, dedicated individuals I have had the honor of knowing.

As for my crew...Maddy took some huge steps forward this week as she is finally more comfortable walking!  Alex had acting and violin and continues to love participating in these activities. We have a normal week this week and then Mimi and PopPop come visit. We can't wait for them to get here next Saturday!

These last two are of Maddy with her beloved Ralphie! Ralph and Kizzy (Ralph's Handler) are Maddy's very favorite people at the hospital. Ralph and the other 4 Therapy Dogs were obtained through the Sit, Stay, Play program that is funded through Children's Miracle Network Donations. 

A Quiet Week

This week has been really quiet! It was spring Break in Texas so most of Alex's activities were cancelled for the week. That along with Maddy's broken foot slowing us down means we spent most of the week at home. Maddy is still not wanting to walk, but will at least stand for a min or so and I am sure it is not pain. Alex played Violin and had a cardiology appt, Maddy had therapy and we had lunch with good friends, but that is about all we did! Now to gear up for the craziness to start again tomorrow!

 Maddy FINALLY standing!

 Our Sweet Mia

 Maddy at the Hospital discovering a View Master

 Alex at a Cardiology Appt

 Crazy Zoey

Maddy and her Best Friend, Wyatt

Poor Maddy

Tuesday night Maddy was crawling down the stairs for dinner and slipped on the last step before the landing. She was crying hysterically. At first I thought she was just scared, but she quickly told me her foot hurt. She barely ate (which anyone who knows Maddy, knows is really unusual!). When I went to put her down from her chair she started screaming again that her foot hurt. She refused to stand or walk the rest of the night. I was hoping that she would sleep and forget about it and wake up good as new Wednesday. Unfortunately, it was quickly clear that she was still in tremendous pain if she attempted to stand. I tried to get in with our pediatrician, but he had no appointments and urged me to take her to Urgent Care. They took x-rays at urgent care, but they were read as normal. By Wednesday evening Maddy had spiked a fever of 103 that climbed to 104 despite tylenol. Our pediatrician asked to see her Thursday morning. Maddy woke up yesterday afebrile, but still refusing to weight bear. The few times she forgot and tried to stand she would scream and crumble to the floor. Dr. Benzick felt sure we were dealing with a fracture despite the negative x-rays. He originally thought it might be a "toddler fracture" (fracture of the lower tibia), but after examining her and listening to her explain where it hurt he felt like it was her foot. He referred us to orthopedics today. They redid x-rays and confirmed a fracture in her 5th metatarsal. Based on her exam she may also have fractured her 4th metatarsal. Poor girl is now sporting a blue cast for the next 4 weeks. She has been such a trooper, but can't wait to start feeling better so she can stand and hobble around to get what she wants. Although she has reverted to crawling in the meantime.

We were supposed to be travelling to San Antonio this weekend for a quick get a way, but had to postpone it.

We did manage to have some fun yesterday. The Cook Children's Health Foundation asked Maddy and Alex to be a part of their marketing plan and take photos for their Children's Miracle Network Promotional materials. We love the girls at the foundation and all they do for Cooks. We were so happy to spend a little time with them yesterday and they got some really cute photos despite Maddy not being able to stand!

We are just planning on a quiet weekend and week while Maddy starts to heal. Thanks for checking in on us!

Ali

Grateful

I have spent all day thinking of what I want to say...How do you express gratitude for time spent, for love given, for selflessness, for lessons taught. Last year we were asked to participate in Dance Marathon and we had no idea how much it would come to mean to us. How much we would grow to love our girls at the Cook Children's Health Foundation. How much we would appreciate a group of College Students. How much FUN we would have! For me as a Mom it is so important that Alex (and Maddy) not only see all of the hard times and heartache associated with having Mitochondrial Disease, but also the many blessings. Over the years the blessings have been plenty and I love the opportunity to teach the kids to look for the positive in all situations. The greatest blessing has been the amazing people we have met on our journey. From friends all across the country, to doctors and nurses, child life staff, celebrities and the many people who give of their time, energy and money to support our family and our hospital.

As we geared up for TCU Dance marathon this year it was with so much excitement as we knew some of our "friends" would be there. Maddy and Alex had the most incredible time. Alex wanted to stay way longer then planned and we dragged Maddy out kicking and screaming! The students were so welcoming and loving. Between Alex and his "dream team" and Maddy and her girl with the bumble bee ears, the kids were surrounded with love.

 Alex, Haylie, Jenny and Tanner

 Alex and Maddy having a balloon fight

 Alex playing a Virtual Reality Game

 Alex and Grant, one of the VP's of Cook Children's

 Maddy and one of "her girls"

 Alex's dream team

 Maddy and Eileen, family relations director

 Alex and his best bud, Tanner

Alex and Jenny, Dance Marathon Manager for CMN

I always think that finding ways to give and help others is important, but I am humbled by the generosity of these college students who give so much of their time and energy to help raise money for Cook Children's. My hope is that Alex and I , through our speech, were able to express a little of our gratitude and help these precious kids see the difference they are making for so many families in the DFW area. I hope we can all look at these young adults and strive to love and serve as they do.

Ali

PS- Did I mention they raised $90,000 for Cook Children's!!!!