Thursday, July 27, 2017

A Day in the Life

A Day in the Life of Nikko – July 2017

·      Nikko wakes up and jumps down from his bunk bed, moves to the living room and picks up right where he left off the night before: looking at YouTube on his phone. He doesn’t change out of his pajamas until I mention it or go to his drawer and pick out some shorts. I let him pick out his own shirt. He can dress himself, but I may need to point out that his waistband needs adjusting.
·      Breakfast for Nikko starts with his medication: 2 Abilify, 2 Sertraline, 1 Allegra, wash down with Minute Maid fruit punch. His meals vary, but this month they are croissants with chocolate chips, OR pasta ravioli from Costco with red sauce (jarred).
·      It’s the 2nd half of summer, so Nikko goes to summer school. We walk to the bus stop and his head swoops down to sniff my shoulder. It’s an idiosyncrasy that he has been doing for a few months. He’s loud, in a good mood, saying phrases from a random episode of Thomas the Tank Engine.

·      I stand on the bus corner and Nikko gets dropped off. He’s happy, loud, swoops down to sniff my shoulder, squeals in delight and gallops ahead of me for a few concrete seams. Once inside he goes straight to the bathroom to pee. For lunch this week he has been asking for pizza bagels, a meal I reintroduced to him because I was running out of options. Lunches and dinners are the same. They have been a combination of mac and cheese from Auntie Anne’s or made from scratch by Denis; plain hamburgers on plain buns, with the buns heated in the microwave but NOT toasted; pasta ravioli, the breakfast concoction from above; Teriyaki Chicken meatballs from Mariano’s; Ramen soup with 2 eggs, at times; and now, pizza bagels. He can help me prep them, actually. Nikko likes helping with cooking, especially making mashed potatoes, brownies, and pizza bagels. Fruit punch accompanies all meals.
·      After lunch, he trots off to grab his phone and plop down on the couch, watching YouTube.
·      On Thursdays, we have speech therapy.
·      Nikko has been opening the front door and checking for packages from Amazon. He went through a phase where he was waiting for a variety of DVDs to arrive and add to his overflowing collection. Every time a box arrived, no matter whom the box belonged, Nikko wanted to open it.
·      At snack time, Nikko usually had a bag of Pirate’s Booty cheese puffs. He would vary it with a brownie or chocolate chip cookie. A package of fruit snacks was often devoured as well.
·      Nikko likes to put on his Crocs and go outside. He never takes off wandering down the block. Instead, he stands near the curb and plucks the bark off the front yard tree, or stands on the manhole cover. He will take a shovel and dig in the dirt underneath our front picture window. Nikko likes to be outdoors, on his terms.

·      Inner is usually around 6pm. Same meal choices as lunch. By this time of the day he may have been asking me a million times, “Where’s Daddy?” Nikko wanted to know if Denis was coming home “at night” which meant the sky was dark, or “at day” which mean that the sky was still light outside.
·      At 7:30 I would give Nikko his “Mucinex” cocktail: 2 melatonin gummies and 1 clonodine. Then Nikko would go get his pajamas and head to the bathroom to brush his teeth. Then he would get in the tub, but first scoop any hairs out of the tub. Nikko can give himself a bath.
·      By 8:30 Nikko would be drowsy, so I’d tell him that it was time to go to bed. He’d gather his 2 blankets, Buddy Bear stuffed animal, and two stuffed frogs. As a family, we’d do thankfuls together, then Denis would say a prayer. Nikko would have two small camping lanterns in his bed. He would wait to hear me turn on the humidifier in his room before passing out.

·      Some nights, Nikko would sleep straight until 7ish the next morning. But some nights Nikko might get up to use the bathroom, or would wake up around 5:30 and decide he was getting up. Sometimes he’d fall back asleep on the couch. And then we’d start all over again in the morning.

Our estate planning attorney asked us to write a typical day in Nikko's life. This is only a glimpse
of what any given summer day is like for Nikko.