Monday, November 26, 2018

Craving a "Routine"

Dominic has not been in school since Tuesday of last week. He craves his "routine" and predictability. Saturday night, Dominic seemed kind of "off."  Yesterday morning, it was continuing. Given that he has had nine seizures, my mind instantly went to that. I kept encouraging him to lie down and rest. He kept telling me no. We decided to decorate the Christmas tree in our living room on Sunday. The hubby put the lights on and Lauren, Dominic and I started putting on the ornaments. Dominic didn't crack a smile the entire time we were decorating, he was actually unsteady on his feet and his pupils were dilated.  I started getting really concerned and was thinking I should call the pediatric neurologist on call. Before I did that, I decided to try something first. I took him into the family room, had him sit on my lap and let him snuggle and close his eyes for a bit. I had Lauren turn off one of the lights. We stayed in the other room for about 15 minutes. After that, he seemed to get back what we call his "sparkle" just a little bit. I sometimes forget that he needs more structure at home.  Even though I write down his "schedule" on a whiteboard every day, on the weekends and days off, it's definitely more "unstructured." We have a very sensitive smoke alarm near our kitchen. I think some turkey drippings fell into the bottom of the stove, so any time I've tried to cook or bake something at 400 degrees or above since Thanksgiving it's gone off.  The weekend was just a tad warm, so the stink bugs decided to make a few appearances.  The smoke alarm and bugs are two things that are definitely not predictable.  Since his language is still not what a ninth-grader's should be, we sometimes still have to rely on the way Dominic acts. Back when he virtually no language, that was the only way we could tell if something was wrong. Anyways, by last night, the "sparkle" had definitely returned.  I know Lauren worries about her little brother, so I sent her a text saying he was acting more like himself. She was relieved. This morning about 5:15 a.m., our phone rang. It was the school system where we live telling us school is cancelled because of snow. As soon as that call came in, the phone rang again. This time it was my husband's office saying they were closed. Since we let the answering machine get it, the phone rang again because he had to punch in a number to confirm he got the call. Then my cell phone rang. My husband had his phone off, so once he turned it on, his phone had a couple messages too! Good grief. Usually Dominic can sleep through anything. Not this morning -  he was up and about, roaming around wanting to get up for the day.



I've heard him yawn a handful of times from the family room. He doesn't need words to tell me he's TIRED, I think the yawning is telling me how he feels!!!!!!

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