06/23/2025
Cute boy. Cute boy. 😍
Update on Jaden Bodhi 💛
As some of you know, Jaden has a rare neuromuscular condition called Nemaline Myopathy, which causes full-body muscle weakness. For some kids, that means no movement at all and using special devices to communicate, eat, breathe and get around. Thankfully, Jaden has always been on the milder side — he has some mobility and we’ve managed well at home.
But after his first week of school, he caught para-influenza, and it hit him hard and fast. He didn’t have the strength to clear the mucus from his lungs, and we ended up in the ER on the 10th in full respiratory failure.
He responded well to the breathing treatments, but because he was on strict “nothing by mouth” orders, he lost a significant amount of weight on just fluids in the ICU. He was deemed severe malnutrition.
Most kids with NM need some degree of support for breathing and eating. Jaden has been using BiPAP at night, but I’ve always been able to feed him by mouth — until now. This illness was just too much for his little body without food for several days. His weight dropped to the 0.15th percentile.
After extensive consideration. I agreed to a temporary NG (nasogastric) tube to help supplement his nutrition. But I still believe, with the right high-calorie shakes and support, that he can meet his nutrition and weight goals by mouth. So for now, we’re holding off on a G-tube surgery and doing everything we can to prove it’s possible 💪
My hope is that we can meet the hospital’s discharge goals, go home with the NG tube for a short while, and eventually remove it once he’s stable — but I’ve also come to peace with the idea that his NM makes it extremely taxing on him to try and get ALL his nutrition requirements met on his own. I am asking a lot of him and he might need a G-tube later on, if not after this trial then sometime in the future.
It’s a lot for him to handle, but he’s strong. And so are we.
Thanks for your continued love and support
💛🙏