draxil

It's what happens with school but it's also what happened with Laila on her visit to the grandparents this weekend. They kept her an extra day (through Monday at 10:30 a.m.), and she initially had some energy when she came home, but eventually fell asleep on the couch and later took a long nap in her room. I'm at the office today, but sashagee told me that Laila is also being cuddly and taking a nap today. We've kept her home from school both days, which I'm not happy about since she's been missing a lot of school lately, but when she has a fever of 38.3°C and snot is streaming from her nose and she just wants to sleep, we can't exactly send her to school. Hopefully she feels better tomorrow.

The rest of the weekend went much better, though. We were originally going to drive Laila out to the grandparents on Friday after work, give back their car (which we've had for a couple months now), but last week we were invited to a birthday party of one of Laila's classmates, so on Friday we lit the Shabbat candles and spent the night in:

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...and then Saturday morning we went out in the fortunately not-raining weather to the Lincoln Park Zoo and wandered a bit until we found the birthday boy. This took some doing, because none of us--including the birthday family--knew that the zoo was having a Spooky Family Event, so there were hundreds of people around in costume, tables of zoo employees passing out candy, carnival rides, the works. We went from exhibit to exhibit, watching the lions who were out sunning themselves in the unseasonably-warm weather, the kids went into a big bouncy obstacle course, they ran all around the children's garden, and we rode the train for a bit when the party was over. Laila hung back a bit, but she wasn't the only kid who did, so I didn't feel too bad. Some of those kids definitely had a ton of energy.

We drove out to the suburbs, dropped off the car and Laila, went out to a lunch date--I got the poke, sashagee got a brie burger--got some dessert and then hopped on the train. All of that meant we got home close to 5 p.m., almost in time for the party we were going to, so I finished up my exercise while sashagee sat down for a bit, we packed up the grandma's potato soup that we were bringing, and called a Lyft to head to spacedragon's soup party!

This all started from a Discord thread that spiraled out into dozens of soup jokes and memes, and eventually spiraled out into a bunch of people wanting to eat soup. We arrived a little later after the initial soup consumption, but there was still some lentil soup (made by confuciousdragon) and vegan arroz caldo (made by become_unglu3d--the chicken version had already been eaten) as well as French bread and tomato soup bread (think zucchini bread but tomato soup based), so I took a bunch of lentil soup and bread and stood around the kitchen table chatting with people about Witch Watch and soup. Despite being full, a bunch of people came back to sample sashagee's grandma's potato soup (potatoes, milk, carrots, green onions), and we ended up staying until midnight when everyone finally ran out of energy and went home.

The next day sashagee wasn't feeling well, so other than a quick shopping trip out to the Middle Eastern Grocery Store to restock on pita and halvah and pickles we didn't do anything. And then Monday, Laila came back sick. And so we come full circle.

Alright, workday's over, time to pick up the last CSA box of the year.

One benefit of Laila having a speech delay is that a lot of really cute toddler expressions that go away too fast (from a parents' perspective) have stuck around for longer. Here's a list of them at this point, so I don't forget them later:

• Tromise: What she says when she's telling us she won't do it (whatever "it" is) again. Upgrades to "Big Tromise" when she's trying to show us how serious she is. This is already fading away into "Promise"
• Princess Stuff: Sparkly gowns, high heels, tiaras, gloves, anything that she knows a princess would wear.
• Hold You: In most other circumstances she's got I/you down but this one lingers when she wants me to pick her up.
• Same same!: Any time two things are similar, usually accompanied by pointing at them and then crossing her arms and pointing at the opposite one.
• Big Giiiiiiiirl!: Always in a sing-song voice, whenever she does something she knows is a sign of getting older that she's proud of, like putting her clothes on by herself. She'll also use "Big girl" to describe anyone acting like a grownup--I got called a big girl for putting my shoes on myself.
• Cheese hangaburs: What she says when someone is taking a picture of her.
• Ah-bay: The alphabet.
• Peppersalts: Salt and pepper.
• Little Girl: There are three classifications of people--babies, little girls, and people who are elderly. A little girl is anyone from about age 6 to 45.
• Flamingos: "Mangos." Sometimes this becomes "Flamangos."
• Somegetti: Spaghetti.

What a cutey.

Poor Laila.

Not because she was injured or anything, B"H. We knew this was coming--they wanted to put her in for a week and take her off her meds so they could get some good EEG images of what her seizures look like when they're uncontrolled (relatively speaking). Somewhat worryingly, it happened almost immediately after they stopped her medicines. The next day, she had two seizures in the night, and the night after she had at least one and possibly two, so they put her back on her medicines and she hasn't had one since. When they talked to sashagee about what they found, they said that:

• Laila's seizures are all coming from a single area in her brain, which is good. A lot of the really difficulty-to-solve problems show up if you have bilateral seizures.
• Because Laila is currently on her fourth medicine and no previous medicine has controlled her seizures for longer than a few months, brain surgery is now on the table.
• They have a new medicine they're putting her on that is supposed to work really well with one of her current medicine, so the doctors are hopeful that this might be a solution.
• Laila's main doctor is also a professor of pediatric neurology, so they're the best person we could have taking care of her.

So we're waiting to see what happens with her new medicine.

That's not really why I felt bad for Laila, though--all her seizures happen during her sleep, I'm not sure she even knows she has epilepsy--why I feel bad is because she was stuck in a single room, attached to a set of cords hooked up to her head that she couldn't touch or move, for four days. I went to visit her and sashagee every day after work, and around the halfway point of the week she got so frustrated with her cords on her head that were itching and that we kept not letting her scratch--and when she did manage to scratch one, it came off and the tech had to come back in and reattach it. She ended up crying herself to sleep after an hour and a half of fidgeting and scratching. It was really awful to watch, and I'm just glad that when she woke up the next morning I heard that she was a her normal, cheery self again.

She has an MRI next week so they can get a better image of her brain and try to figure out exactly what part of her brain is causing the seizures. Once they know that, they'll better be able to figure out what to do.