Every time Weslee's seizures slow down, I feel a glimmer of hope. Maybe we are accidentally doing something right. Maybe he is avoiding a food or action that contributes to his seizures. Maybe. Maybe. Maybe.
Wishful thinking. I can hope and wish and desperately desire the intractable epilepsy to become manageable. Or just gone.
I must relegate it to dream status. Or a wish.
Yesterday reminded me. He was on the phone with his one friend while I was upstairs getting ready to go down for lunch. I heard the first seizure, and before I could run down the stairs, he had another. And several more. In between, we struggled to get an emergency dose of meds in him. It took a few tries because he has troubles making the water bottle come up to his mouth, and then trying to swallow. I (strongly) suggested to his friend they pick up the chat later, and luckily that young man understood and agreed.
I got Weslee up to his "safe spot" (his bed). The cluster finally abated, leaving him so tired and irritable.
These weren't all gelastic seizures. I saw a 'wiggle worm' and a couple other ones. Still, even though they weren't tonic clonics (grand mal), they had a punch to the gut quality.
What a day!
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ETA: Today (Feb 4 2025) started at 8:42 a.m. with another cluster. If this follows the pattern, we will have a few more days of these. A CLUSTER of CLUSTERS.
...And CVS only gave Weslee **1** box of his emergency rescue nasal spray. Uh...nope. Sending msg to his epileptologist now.
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