Every night before we begin eating dinner, Mike and I take a moment doing the one thing keeping our relationship intact: turning on music to drown out his chewing.
It’s not because Mike is a particularly noisy eater. In fact, as a result of my daily critiques of his chewing habits (“The fish is already dead, it’s not necessary for you to gnash each bite ONE MILLION TIMES before you swallow!”), Mike probably eats more quietly than most.
It’s because of misophonia, a syndrome that causes people like myself to hate some everyday, otherwise normal noises. A hatred that makes these seemingly unavoidable noises completely intolerable.
Mike and I have worked around my weird noise issues by listening to music during meals and banning gum from the house. He’s also stopped taking it personally when I shriek at him to, “Get your freaking chips and salsa away from me NOW.”
I like to think it’s helped him appreciate the little things. How many other people can find such joy in eating Pringles on the couch, in the middle of the living room, when the wife is away?
Because of this, I had hoped that Luella wouldn’t have any issues with sound.
Unfortunately, while her issues are very different, that hasn’t been the case.
If you’ve spent any amount of time with Luella, you’ve probably noticed her aversion to loud noises. In fact, the noise doesn’t even need to be particularly loud. Silverware clanking on plates, sudden coughs, and the Facetime ring tone all cause her to flinch and suddenly jerk her upper body to the side (and for her to be on the verge of tears by the time my mom answers video calls from us).
I questioned Luella’s neurologist about this reaction a few months ago and she assured me they were a fairly typical startle response to loud or sudden noises for a kid with Luella’s neurological issues.
But three weeks ago, we were at a regular neurology check-up when my chair squeaked and Luella nearly jerked herself out of my arms.
“I don’t think that’s a ‘startle’,” the neurologist said. “I think that’s a seizure.”
An EEG confirmed her suspicions.
In terms of seizures, this is the best case scenario. With an increased dose, the anti-seizure medication Luella is already on could help to stop them completely. Because they are so short, lasting only about 5 seconds, the seizures aren’t doing any developmental damage. And since she isn’t standing, walking, or driving, there isn’t much risk of her falling or injuring herself.
We’re hoping that these seizures are resolved quickly and without changing medications.
If they’re not?
I guess we’ll add sudden clanking and coughing to the list of noises that are frowned upon in our home.
And Mike will be able to take delight in smacking his gum,
mashing disgusting bananas around his mouth eating bananas, AND loudly shutting kitchen cabinets while Luella and I are safely out of the house.
Health Update: We’ve been using the term for quite some time, but we’ve officially adopted the label “cerebral palsy” to talk about some of Luella’s issues. Cerebral palsy is an extremely broad term that describes disorders related to development of movement and posture as a result of damage to a baby or infant’s developing brain. Or something. Seizures, feeding difficulties, and visual impairment are all common for kids with cerebral palsy. So in CP world, Luella is actually quite typical!
In other news, Luella has begun taking Diazepam, also known as Valium, to help with the stiffness in her arms. This stiffness is a result of CP and it hasn’t shown any improvement through stretching and exercises. The Valium can help relax the muscles in her arms, but also might relax her muscles EVERYWHERE, so we’ll be working extra hard on getting her strong.
Luella was also prescribed glasses, which has been my favorite negative medical development to date. Get ready for an adorable, bespectacled Luella to grace your computer screens very soon!