Strongest boy in the world.

Hey everybody! It's been a while, hasn't it?

I've started an update post more times than I can count. I've haven't really known what to say. Life is crazy right now. But it's also simple and weirdly calm.

Cooper received his life saving, miraculous treatment on Wednesday, April 8th.

We had to be at Nationwide Children's by 7am. When we got there they would only let one of us up to the infusion clinic with him. So I headed upstairs while Cody headed to the car. We knew it was a possibility but we were hopeful that since we all three showed up together they would just let us both go up with him. Even knowing I would probably be alone for the day, I couldn't help but be emotional. I was upset that I had to watch him have two IVs inserted and be the only one to comfort him throughout the day. I was upset that I didn't have my husband there to talk to and comfort me. But I was most upset because this was the day where Cooper's life was saved. I was sad for my husband because he didn't get to be there to experience the first day of the rest of Cooper's life.

As upset and sad as I was, I didn't have time to wallow in my feelings. Cooper is not a dumb kid. I could tell from the moment we walked into the infusion center that he knew it was a different kind of appointment. He was restless. And not nearly as calm and happy as he usually is. So I didn't let him see just how disappointed I was that his dad couldn't be with us. Instead I talked to him about how strong he was and how proud I was of him for everything he's had to endure the last six months.

And I absolutely can not say enough about Nationwide Children's Hospital. They. Are. Phenomenal. The nurses we had that day were some of the best nurses I've ever had. They talked about how excited they were for him and for our family. They told us they knew he was destined for greatness and they couldn't wait to hear about updates on his improvement. I felt so at ease with them. I felt like they actually cared for my baby as if he was one of theirs. It made the day so much easier.

Since treatment day, nothing too eventful has happened. Cooper goes once a week for bloodwork to monitor his liver levels. So far everything has looked amazing. His doctor even told me this week that she had to do a double take when looking at his numbers because they're so good. She said we aren't out of the woods yet but his numbers are great and looking much better than she had expected. We've even gotten the go ahead to begin the process of weaning him off the steroids. This is huge because we were told not to expect a lower dose for months.

Cody and I can't believe how much Coop has improved in just five short weeks. We were told it could take up to a few months before we saw any sign of improvement but within just a few days we could tell his body was getting stronger. He's no longer as floppy as he was. When we pick him up he feels more solid than he has in months. And he's moving his legs so much more! He can reach the top of his head as well as the back of his neck, something I don't think he's ever been able to do. When he's sitting on the floor, he can now lower himself most of the way back instead of just flopping backwards. And he's able to pull himself forward into a sitting position when laying on an incline.

We're hopeful that once he's able to start therapy again we will see an even bigger improvement that will one day lead to him walking independently. But until then, we'll continue to be his biggest cheerleaders and never ever let him forget that regardless of his condition, he's the strongest boy in the world.