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!

Quick Hospital Stay

After returning from Washington late Thursday night, I scrambled all day Friday to try and get our lives back in order. I got things mostly put back together...cleaning done, laundry done, work done, medical supplies put away, etc.

Saturday and Sunday I allowed myself the grace to be lazy and try and catch up on some much needed relaxation and sleep! All was going according to schedule until Alex started to feel bad! Sunday morning just as we were leaving for church, Alex mentioned he didn't feel great and asked for an extra dose of Hydrocortisone. That is not uncommon so I didn't think anything of it. Around 2:00 he asked for extra hydrocortisone again. At 6:00 he told me he was pretty sure he had a fever. Sure enough his temp was 102.2 so we headed to the hospital. Alex always causes a sepsis alert to be called when we arrive at the ER which brings a slew of medical people into our room. He stabilized pretty quickly and we were able to get up to a room on our favorite floor. Unfortunately the flurry of activity didn't slow down until 4 Am. (So much for my much needed sleep)!

By Monday Alex's temperature was gone. I ran home to get him something we had forgotten in our rush to get to the hospital the night before. When I got back, Alex was hunched over in pain with tears running down his face. Alex hides his pain ALWAYS so I knew he was really hurting. He was sure based on pain level and location that it was his pancreas. We scrambled to get him a dose of pain meds and he slept for a few hours. When he woke up his pain level was MUCH better.

Tuesday morning we decided with our doctors that if labs looked okay we could go home because he had been fever free for over 24 hours and his blood cultures had all been negative for 36+ hours. When the doctor came in a few hours later with a devastated look on her face, I was not happy. Luckily, blood cultures were still negative. However, Alex's blood counts had dropped almost 3 points in 2 days, his pancreas labs had bumped a little and his inflammation marker was up quite a bit. After more discussion, I reassured her that this used to be Alex's pattern. Those of you who have followed us for a long time will remember that we used to go into the hospital every 4-6 weeks with a high fever. We often wouldn't find a cause and frequently needed blood transfusions. We agreed that we would test his ostomy output and if there was no blood we could still go home as long as I promised to bring him back at the slightest sign something was off. So we made it home late Tuesday night.

Always the diva

Not bad for being in the hospital

Our favorite visitor

Alex has seemed fine since then. His labs Thursday looked a tad better. I am hoping that this is not the start of the old pattern. I am working with his doctors on what we need to tweak to try and keep him out of the hospital as much as possible.

We had a quiet day on the 4th as we tried once again to settle into home and relax a bit. Thursday, Alex had a unique opportunity to film a promotional video for Children's Miracle Network and a corporate sponsor. He continues to amaze with his poise and confidence in front of the camera and important people.

Always Dancing

At each setback with Alex, I am reminded of the incredible village we have around us. Not only the doctors and nurses and hospital "friends" who are so amazing in caring for Alex physically and all of us emotionally, but also the friends who are always willing to step up and help make sure Maddy is loved on and having fun while I am with Alex. It means so much more then I could ever say to know that both of my children are cared for and loved regardless of where I need to be.

Maddy thinks Mrs. Mitchell is her BFF

This week is a busy one with appointments for both kids and another dance camp for Maddy Moo. Please keep us in your prayers as we try and stay healthy!
Ali