Crazy Month

July has totally gotten away from me! It has been lots of medical and lots of fun, but really busy!

Let me see....

Alex saw a new sleep doctor who is trying to help us with his restless leg syndrome. We tweaked a med and it seems to be better! Yeah! We wound up back inpatient from July 12th through the 15th with another mystery fever with no explanation. We have also seen our pediatrician for his 14 year well check, his psychiatrist for a med check, and our hematologist and pulmonologist for  follow-ups! We had a little trouble with his port not wanting to function properly for a few days, but we made an easy change and it appears to be fixed!

For Maddy, she did another dance camp at Texas Ballet Theater, saw a rheumatologist to try and assess her leg pain, the dentist, Dr. Benzick to keep him informed of some changes, and her hematologist for a follow-up along with her normal therapy!

On top of all of the medical craziness we have been deep into Summer Theater Workshop for the past two weeks. This 3 weeks of acting, singing, dancing and friends is so special each year. Alex misses out on so many experiences because of his health, but the directors and our church make this so doable for him! I love watching him come alive on stage, but more I love watching the grins and laughter as he connects with friends between scenes. I love the camaraderie and the friendships that are built and renewed each summer. I love the normalcy of Alex being a kid and hanging out and cutting up with the other kids. It is magical to me.

Alex is also gearing up for our annual fundraiser for Cook Children's and CMNH. Extra Life means so much to Alex. Please visit his page and consider donating to a cause that means so much to him.
https://www.extra-life.org/participant/AL3X684

We are gearing up this week to finish the show and head off to Mimi and PopPop's for our annual trip. We are so excited and I am praying that Alex's health and energy hold up for our beloved trip.

Please pray for Alex and for safe travels.
Ali

PS- We have been so busy, I hardly even took pictures!