There are some definite issues that need daily attention. Swallowing is a real problem and will only get worse. The suction/aspirator machine has been tremendously helpful. And there's morphine for those moments when his body takes over and anxiety sets in because when you can't swallow sometimes you can't breathe. It's frightening. Damonito experiences panic attacks just like anyone else.
Damonito loves to turn on and off the light switch in his room. He watches the lights and the fan. He's discouraged from turning everything off because the fan in the room helps keep it cool. Also, he's struggling to walk making getting to the light switch difficult. So I bought him his very own light switch that lights up when he flips it on. He loved it. There is the possibility it would cause seizures so he'll have to be closely supervised when playing with it. But so far, so good.
