Well, we've have a stressful week here at Amelie's Angels headquarters.
Amelie started having some sort of seizure--a new version, if you will. Her left (paralytic) hand was jerking rhythmically for several minutes. Then she had a some weird movements in her left foot, and the nurses observed the movement travel up her leg to her arm, then chest. Her breathing never suffered, she never de-sated (a medical term for de-saturation, lack of oxygen).
Then came a fever. For 4 days this child barely moved. I mean, barely moved. And whenever we tried to move her, change her diaper, rotate her, she moaned in pain, groaned in agony, and whimpered in exhaustion. Her fever hung out at 101.1, nothing totally crazy, but still alarming for a a former chemo kid who's immune system is still pretty weak. She is clearly fighting some sort of cold or virus. We did(do) everything we could(can) to keep her comfortable, CBD and THC are a GODSEND. she instantly relaxes and falls into a deep, restorative asleep, in a calm, peaceful sort of way. [We gave tylenol and motrin of course, but we're really trying to stay away from narcotics. They have nasty side effects, and never seem to really make her feel better, just "weird" she used to say.]
She continued to have these weird seizures though, and so that put us all on edge.
Seizures in and of themselves aren't necessarily dangerous, especially if the person's breathing isn't compromised. With Amelie, however, because she's just so darn special and unique, her seizures have always presented atypical. Her seizures are not just a symptom of her brain damage, but have also been indicators of MORE brain necrosis. Usually when she starts having big seizures, they're a prelude to an "episode" where she loses more ability to function, and we lose more of her. So, in this case, its just scary as shit. It's like this massive cloud hanging over your house, you know it has a tornado in it, but you have no idea if or when it's touching down. So when people say, "live one day at a time", which is true and all we can do, it's still like, sure, that's soooo easy. "No tornado today, babe" is an unspoken sentence my husband and I say to each other when we lock eyes.
That being said, we got her out of bed and into her chair into the sunlight! Sun always makes me feel better. Her fever has subsided, and we've increased her CBD, and haven't seen any seizures. She opened her eyes a lot today! and even growled at me when I had to move her around. haha I love the growls. It's her way of letting me know she's still here and "don't f*&$ with me mom!" HA!
Now she's sleeping peacefully in her daddy's arms. No tornado today.