Bike riding

This is the sort of every day stuff our HeartKid shouldn’t be able to do. He has severe leakage of his aortic valve and mild left ventricular hypertrophy. He’s had 2 open heart surgeries already and we’re waiting on the next one, which is going to be huge.

We’ve been on hold for his next surgery for years now. Understandably, cardiologists don’t like making any predictions, but when we asked for ball park time frame, his cardiologist thought he’d need the surgery by the age of 2. He’s just turned 5.

While it’s amazing, living on edge like this is actually really draining mentally.

But despite his dodgy valve, he just keeps going. When his activity levels change it will be time for the next surgery. For now, we’re making the most of a 6 month gap between cardiology reviews - the longest break we’ve had for 5 years.