Alex and Maddy

Alex and Maddy

Friday, February 24, 2017

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!


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