As a result of this change, Gavin can safely go back to bloodwork once a month. He’s happy about that and so are we. 

This is where things get more challenging for us. 

We’ve been instructed to limit Gavin’s excitement as much as humanly possible because this causes him to decompensate. This means anything that can get him wound up, upset or really excited. It doesn’t matter if it’s excitement over opening his birthday presents or being upset that he dropped a Lego creation on the floor. 

Good excitement or bad excitement, it all has the same impact on his emotional stability and it’s not good.  

This is especially important in light of his medication no longer working as well as it used to. 

What does this mean? That’s a pretty good question but I could best describe this a pretty hardcore sensory diet. The idea being to limit stimuli that can cause him to sorta emotionally rev-up for any reason. 

We’ve had to do this before with him when he was younger and it wasn’t easy. At the time, Emmett wasn’t born and Elliott was just a baby. That made it a little easier because Elliott was too young to notice and you know, Emmett wasn’t around to raise Hell like he is today.