Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
I keep thinking, “Right. Today is going to be better than yesterday.” Then it isn’t. To give you a bit of context of “normal” seizures for Eloise: Worst seizure control time (pre correct meds): December 2021 — 51 seizures Best seizure control time: May-July 2022 — 1 seizure total August — 12 seizures September (she... Continue Reading →
Man it’s been a rough season around here. The good news, I hope, is that it’s just a season. I had planned to write about our shorter-than-expected long Tartu hospital stay. But that plan got derailed yesterday when seizures started. But let’s give you a little background. A few weeks ago (after that weekend of... Continue Reading →
Thankfully, most days with Eloise are great — fantastic, even. But not all days are all good. Today Eloise went to bed not having had supper. And, spoiler alert, it wasn't because she being punished.
While training to be a counselor, a friend once said he learned never to assume you know what emotion someone has about an event. "Maybe a woman just lost her long time husband and you think, 'Gosh, I'm sorry, that must have been tough.' But you never know. Maybe he was a violent alcoholic and so her reaction was actually, 'Thank God he's gone. I'm finally free!'" So when you watch this video of Eloise, do you feel pity? Excitement? Or maybe even anger and frustration?
This has been one heckuva week for all 3 of us. Apparently the stress of feeling like we’re constantly fighting — to get Eloise to eat, to get Eloise to nap, to get Eloise’s pain under control — has been taking a toll on us. Add on the fact that her seizures returned for 24 hours and for a minute there we were convinced we were gonna go back to the hospital and 😢. Yeah. It’s not been our best moments.
Eloise The Tiny Fighter 