I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.
Our son is currently undiagnosed. He has a suspected metabolic condition, but his doctors haven’t been able to confirm that theory, much less figure out which one specifically. He needs more food than he should need to grow and gain weight and we aren’t sure why. He also has low muscle tone, which causes him to tire easily. The combination of the fatigue and needing an abnormally large number of calories has left him on a feeding tube for a large portion of his life so far.
The low muscle tone, or hypotonia, means he’s significantly behind on gross motor skills. We’re still working with him every day to help him learn to walk and crawl. With weekly therapy, he’s making about a month’s worth of progress every month. He’s not catching up but he’s also not falling behind. It took a long time to get to the point where he could tolerate exercising for the entire 45 minute appointment, and we’re so proud of him!
Overall, he’s making good progress and I’m proud of how far he’s come. We’re still hoping they’ll figure out why he needs so many extra calories and why he fatigues so easily. Anyway, now you know!