Travel X2

This has been the craziest couple weeks.

The kids are on the mend. Thank Goodness! Maddy has recovered from her sinus and ear infection and was back at school this week. She was so happy to be back after missing two weeks. She is still having some leg pain, but we are hoping our Mito specialist can figure that out when we see her. In the meantime,  we are just trying to help her however we can. Alex's stomach pain is stable. i don't know that I would say it is better, but he is tolerating it and trying to join the land of the living. We have seen both our endocrinologist and GI over the past two weeks trying to get him to a better place. Our major concern is with Endocrine. Alex's body does not make cortisol. He receives hydrocortisone everyday and gets more when his body is "stressed" in any way. Not enough cortisol sends him into a crisis and shock. He has been in shock in the ER multiple times in crisis. It is one of the scariest things we deal with because it could be fatal at any point. He is struggling to absorb meds right now so we were troubleshooting with his endo about the best plan to make sure he is getting his life saving hydrocortisone. We have some ideas, but he wanted to hear what GI said about the malabsorption before making major changes.  We saw GI last Friday and made some med changes in hopes of seeing some improvement. Unfortunately, we didn't see as much change as we hoped. We are adding another medication and running some labs. We are still hoping we can get this under control before we have to switch meds to IV form. We are still not feeding at all through Alex's feeding tube which leaves him hooked up to his port 24-7. It isn't ideal to stay hooked up to an IV all day for a 13 year old boy, but we will do whatever we need to to keep him healthy.

Last weekend Alex and I went away for the weekend with his church youth group for his confirmation retreat. We had an incredible time. I love to watch him enjoy his time and watch his friendships continue to grow with his friends that accept him exactly where he is. I was also able to have some fellowship with the other chaperones. We came home exhausted, but with our spirits renewed. I love that he doesn't mind having me around and even wants me to participate. He came to find me so we could zipline together!

After returning home Sunday, I had to turn around and fly out Monday morning to Cincinnati for training for my new job. In 13 years, I have never left Alex. I had a hard time leaving Monday morning. There were lots of tears involved. Once I arrived in Cincinnati I had a great time. Alex has been a patient of Thrive RX for almost 6 years. I got to meet people I have talked to for many years and I was able to see the behind the scenes of how Alex's TPN is made and how his supplies are pulled and packed. I also made a new group of friends. The 10 people in my orientation class had a great time and we really made the most of the time we were not in class. The kids did great while I was gone and it was good for me to get away for a few days. I was proud of myself for going despite my fear.

Tomorrow is one of our favorite days of the year...Dance Marathon at TCU. Hoping that the kids have a good day and feel good enough to enjoy themselves and that Alex and I can use our story to touch these students who give so much.

Ali