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!!!!

One of our favorite Weeks

Today marks the start of a really special weekend for us. This weekend is TCU Dance Marathon. TCU students dance for 12 hours tomorrow to raise money for Cook Children's Hospital. Last year we were asked to speak at DM and not only did we meet an incredible group of students, it was also the launching pad to many more speaking opportunities where Alex and I can share our story to raise money for a hospital we love. I am amazed by everyone who takes time and energy to help families like ours by fundraising, but I am really amazed by the selflessness of college students who take time away from their "fun" to give back. These kids pour so much of their hearts and souls into this weekend. I am honored to share our story and show the importance of what they do. Alex and Maddy love these students and this day. We were lucky enough to spend a few hours with them this evening as they make there final preparations for tomorrow. Maddy just wanted to run and play and dance with "her girls". Alex wanted to talk video games with his favorite guy. Both left smiling and excited for the fun tomorrow will hold.

This week was a pretty typical week. Maddy has had a rough few weeks in therapy. Her therapists are shaking their heads trying to find a way to strengthen those little muscles when she fatigues so quickly. It's a good thing she loves her Suzan and Nicole and that they love her because sessions are not always easy!

Alex is still struggling to get his GI system to wake up and get back to his normal. He normally runs feeds at 50 cc/hr. We are stuck at 40 cc of half strength formula and have had no luck advancing past that. We ran labs this week and are hoping they may give us some clues as to how to help him further. He is still more tired then usual, but seems to be improving in that area. 

This past Sunday was Scout Sunday. Our church is also the charter organization for Alex's scout troop so he was happy to serve during worship. 

I have had a few people ask about our nursing situation. We used to have one nurse who worked 3 days a week and one who worked 1 day a week. The nurse who worked 3 days is the one who is leaving us. Erin (who was working 1 day) has decided to come o as our 3 day nurse. We are so excited to have her full time and not have to adjust to someone new. We will continue to search for someone to work 1-2 other days, but at least I have someone we know and love to care for Alex a few days!

This week was haircut week with both Zoey and Maddy getting haircuts. Alex loves Zoey to have a "show cut" which is shaved through her back and then long on her legs and stomach. He is always happy when she comes back from the groomer. 

We are excited to share all about tomorrow next week!

Ali