Thursday, November 5, 2015


I know...You're not supposed to brag about your kids. It will definitely rub people the wrong way. I'm finally sitting down for the first time today, and my heart is full. I'm having a glass of red wine, and thinking you should never ever give up. And yes, I am going to brag a little about Jacob, just because he's pretty darn amazing.

In August, we stopped CBD (cannabidiol) due to it possibly causing Jacob's abnormal liver values. As we stopped CBD, Jacob's myoclonus came back in full force. Myoclonus is a movement disorder, little rhythmic movements in Jacob's body. It especially attacked his right foot this time. Something that we really wouldn't care about if it weren't for the fact that Jacob communicates by using his right foot. As Jacob listens to the different options on his communication device, he clicks with his right foot when he wants to select an option. With his increased myoclonus, it has been difficult to differentiate between Jacob's purposeful clicks and his clicks caused by myoclonus. We have witnessed Jacob's frustration as he has made a selection on his communication device to simply be clicked out of the screen due to an involuntary movement of his foot.

We knew we had to try something, and our former speech therapist Brittany recommended an OT, Michelle Lange, who specializes in switch access for children like Jacob. She is booked out for weeks, and she's charging you an arm and a leg for her service, but oh man is she absolutely fantastic. I was sitting in my kitchen with a cup of coffee for almost two hours watching how she worked with Jacob from head to toe to figure out what is the best access point for his talker. She figured out that Jacob can communicate by moving his head! She found the right head rest, the right switch, and the right accurate position for our boy. I watched her talent unfold in my kitchen, and I was simply in awe of her.

And then there is our boy. Jacob is sick. He has a pretty bad cold. He's fighting it from home, which is a little victory all in itself. He worked so incredibly hard with her. He was so tired at the end, but kept doing what she asked him to do. In the end, the only thing that kept Jacob going was his switch activated Minion Kevin!

When it was time for Michelle to leave, I took Jacob out of the wheel chair to be met by one of Jacob's enormous diapers...I am not going to go into details, but it was everywhere from the wheel chair, to the floor, and all over Jacob and I. She didn't even lift an eyebrow. She just estimated the cleanup time to half an hour to an hour. She was right on the time estimate, but who cares about poop when Jacob has his voice back again?

Love, Maria.

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