Good Days / Bad Days

I'm Kyle's mom. I've noticed Kyle has good days and bad days, but regardless, he is getting weaker by the day. Kyle is experiencing neuromuscular deficits because the flow of his spinal fluid is getting blocked. Some of his issues are weakness of arms, hands, legs and feet. He is having more difficulty with balance and coordination. He also has major swallowing difficulties. Watching him go through these issues is heart-breaking. I'm trying to prevent him from exhausting himself because I don't know if he will decline more or not if he does too much. I also don't know if he will get strong again after his surgery. I pray he does.