03/16/2026
Hi everyone. I realized it’s been a while since I’ve posted an update about James, so I wanted to take a little time to fill everyone in on what’s been going on with him lately.
Overall, James is still very much James: goofy, stubborn, funny, and determined to do things his own way. But over the past couple of months we’ve been noticing some symptoms that his doctors want to take a closer look at.
Since around January, James has had some ongoing issues with weight loss, decreased appetite, and lower energy than usual. Some days he seems totally fine, but other days he gets tired much more quickly than we’re used to seeing from him. He has also complained about chest discomfort at times.
Yesterday we had one of the more concerning episodes. James was running and playing at a gymnastics birthday party and suddenly came to me saying his heart was beating really fast. When I put my hand on his chest, I could easily feel how hard and fast it was pounding, and another adult even mentioned they could see it beating through his shirt.
Shortly after that he threw up, had a lot of coughing, complained of pain around his belly button area, and became very lethargic. Thankfully, after resting for a while he did rebound and started acting more like himself again.
Because of the symptoms we’ve been seeing... weight loss, appetite changes, fatigue, chest discomfort, and now this episode with his heart racing: his cardiology team has scheduled a Cardiac MRI in May. The goal of the MRI is to get a much more detailed look at how his heart is functioning and how his structures are handling things as he grows.
For those who may not know or are newer to this group, James was born with Shone’s Complex, which is a group of left-sided heart defects. He had surgery at 13 days old to repair his coarctation of the aorta, and he is monitored closely by cardiology as he grows because these heart structures can change over time.
The MRI will help his doctors evaluate things like:
• blood flow through his heart and major vessels
• how well his valves are functioning
• whether any narrowing or obstruction has developed
• how his heart muscle is working overall
It’s one of the best tools they have to see the “big picture” of what’s happening inside his heart right now.
Waiting until May isn’t the easiest thing, especially when symptoms pop up, but for now we’re watching him closely and keeping his medical team updated when things happen. If anything becomes urgent or concerning before then, we won’t hesitate to go in sooner.
As always, we appreciate everyone who checks in, prays for him, or just quietly keeps him in their thoughts. James has a whole army of people cheering him on, and that means a lot to our family.
I’ll keep everyone updated as we learn more and as we get closer to the MRI.
– Gin
