Infantile Spasms . . . Oh.

So I feel a bit embarrassed, but I didn’t realize that the epilepsy Lydia has is called infantile spasms. At her neurology appointment today I mentioned generalized tonic-clonic type seizures and the doc had to correct me that, as he had gently mentioned before, she is in the infantile spasms category. Oh. How did I not cotton on to this term sooner? I guess I took the phrase, “her EEG looks like infantile spasms” as a simile. Darn my English major background, I take things too literally! I thought her epilepsy presentation was one more thing that wasn’t fitting in a clear category, like her genes, her chromosomal tests, and her brain development. No clear pattern. But I was wrong. Lydia has infantile spasms.

I am not panicking. My little light bulb sheds no extra light on the day – I mean, the doctors already knew about this and my understanding adds nothing to help. But my stomach still dropped a little. Now there are google-able outcomes and likely prognoses, very few of them hopeful.

The morbid side of me wants to list out the percentage chances of each possible fate for Lydia but I’m trying to break a very unhelpful ‘future-trip’ habit. Of all things this is the habit that gives me the most grief. So instead I am going to focus on enjoying her snuggle and appreciating my time with her. It is all I can do.