Today has been another one of those days ...
5 a.m. I wake to Teddy fussing. I attempt to ignore him, hoping he'll settle back to sleep on his own.
5:15 a.m. I give up and decide to take a quick shower, so I can settle Teddy down while Dave leaves for work.
5:20 a.m. Dave lays down with Teddy.
5:30 a.m. Dave asks me to get the thermometer. Teddy's temperature is over 100ºF.
5:31 a.m. Teddy gets Tylenol, is stripped half naked, gets cold compresses applied, gets his Keppra, gets a stuffed animal from the freezer to snuggle and gets lavender and peppermint essential oils applied.
5:50 a.m. Teddy settles back to sleep in Dave's arms downstairs. Dave insists on staying home at least until Teddy wakes up. I alternate between standing beside them staring worriedly at Teddy and putzing through the house and picking up things.
6:50 a.m. AJ wakes up. (Of course, this is the type of day that he sleeps in this late.) AJ helps me with laundry, picks up a bit of his room and packs his backpack for school. Then he plays Legos.
7:45 a.m. I begin making pancakes for breakfast since AJ loves them and rarely gets them fresh on weekdays.
7:50 a.m. Teddy wakes up. He crawls down to the floor and hops around, which is a positive sign. He seems much cooler.
8 a.m. We eat pancakes for breakfast, AJ is thankful Papa is home yet from work but sad Teddy isn't feeling good.
8:20 a.m. Dave leaves for work.
And after that, let's see ... AJ played really nicely with Teddy for a while. AJ picked out some toys that I traded him money for him to donate to Goodwill. He got $1.10, and I got a box partially filled with items leaving our house. Then AJ headbutted Teddy, and that's where my day went from bad to worse. Removing tablet privileges for the day ... and now rest of the week due to continued whining and fits ... makes for a tough day. AJ drew pictures of him mad and sad to show me how he feels. (Mine would be foaming at the mouth with hair standing on end, just for the record.) Teddy refused to nap despite being miserably tired ... until he finally went down about 20 minutes ago.
As trying as these days are, I'll gladly accept them (and complain about them here) as long as Teddy doesn't have a seizure. That continues to be our prayer for today.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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