Our 14 year old, Elijah, has now gotten his 5th Remicade treatment for Crohn's Disease. Here are some previous updates, if you are interested in his story. Here's what we learned this week.
First we (me, Molly, Elijah, and Danny) met with Elijah's rheumatologist on Tuesday at Shriner's Hospital in Oak Park. E had received some physical therapy for arthritis at her request and he's done well with it. No need to continue, though he is still a little tight. E has morning soreness, but mostly can do whatever he likes, so we feel this area of his health is better.
We went to the Ronald McDonald House in Chicago (RMHC) after for our overnight, but had most of the day to play around. So we grabbed some Shake Shack for lunch, which is Elijah's absolute favorite place to eat in the city. Then we headed to Millennium Park, which was a favorite place to visit when our kiddos were smaller. Haven't been there in years. It was a wonderful, relaxing time and the boys had a blast.
Then back to the room to relax, then some dinner as provided at the RMHC...italian beef, chips, fruit, and root beer floats. After dark we decide to head back out and walk down to Navy Pier. Not to do anything, but just enjoying a gorgeous evening in Chicago.
Wednesday Elijah had 9am Remicade infusion at Lurie Children's Hospital in Chicago. He was upbeat and happy the whole time, which has not been his experience in previous treatments. He's not a fan of the way Benadryl makes him feel. But this was the best he's felt during treatment, which was a real blessing since we didn't go home right after like usual.
At 3:10pm, and after lunch at Blaze Pizza, we had an appointment with Dr. Brown, E's gastroenterologist. This is the first time we have met with his doctor since his diagnosis. That was the plan from the beginning. They like at least 4 treatments before a follow-up.
A little background: As of the 4th treatment, we were concerned that E wasn't growing enough, or fast enough. We felt there may be a significant growth spurt, so the worry was that the Remicade wasn't working, maybe that his body was developing antibodies for it. Two different tests in the last several weeks seemed to show that the Remicade was working well, but we wanted to hear the doc's explanation.
Here's doc Brown's analysis.
1. Elijah is a healthy boy. There is no evidence of Crohn's sores in his body. Everything from previous tests as well as blood taken Wednesday showed every level of every area of possible concern shows nothing to be concerned about. Everything in his body and blood looks fantastic and the Remicade is doing the job.
2. Elijah is growing better than ever. His growth chart before diagnosis showed plateaued growth. Really bad. Really skinny. Really small. His growth chart since Remicade treatments have started is nearly straight up. It's not explosive growth, but it's solid and continual growth.
We learned months ago that Elijah's bone age was that of a 10-11 year old though he's 14. The doc said that's a good indicator that all the growing that he hasn't done isn't a closed door to future growth. If his bone age was of a 14 year old, he may never get too big. But his body is still ready for explosive growth and we are very thankful for that.
3. Elijah's way forward is patience and calories. With everything headed in the right direction for him, the goal now is getting him good calories. He's eating fairly well, though not eating everything in site like kids often do when growing rapidly. So we are going to start supplementing his diet more with something like Carnation Breakfast Essentials which isn't cheap but helps him add good calories in a simple way. The doctor said to think of how we can do things daily that add up over time to get him the stuff his body needs to grow.
We don't know if he will take off quick with more growth or just keep going slow and steady. Either way, the doctor is convinced it's going very well and we can be happy he's a healthy, growing boy. While Remicade treatments will continue every 8 weeks, we won't see the doctor again until mid-winter since all is going so well.
Thanks, as always, for the many who have been praying for Elijah and our family. Thanks for your expressions of love and concern. I get asked so often about his health, and just in the asking we feel well loved. We've even received some gifts from some of you to help and they have been a tremendous help to us. We love you and thank you so much.
