Listen to the Rain

Yesterday Laila went back to the doctor for her follow-up to her brain surgery after months of healing, and we have some good news from it, and some bad.

The Good

• Laila is cleared for doing flips and spins and other physical activity! That means she can go to the park again, which she's been really missing. sashagee sent me a video of Laila somersaulting in our living room and laughing--it's been months since she's been able to somersault without us stopping her. We're going to sign her back up for swimming lessons.

The Bad

• The doctor isn't sure that the tissue he was unable to remove surgically is benign, and Laila might require a second surgery to remove it. This would be laser surgery, so it's much less invasive, but still. We'll know more after her upcoming MRI and EEG later on in the summer. This might be why she's still having seizures.

Laila herself is doing fine, and later this week I'll take her to the park again. Not soon, though--today after work we're going to the farmer's market, and tomorrow she'll be at occupational therapy. But maybe Friday evening, she'll finally get to run around the park and climb on the equipment again. She can't wait.

This time it's a Mediterranean restaurant called Oasis Fresh, where I got a vegetarian platter. Basmati rice with dolmas on top, side salad, hummus, and pita. Simple and very good. The rice was much better than that place I got the boiled unflavored rice from (Assyrian...something) with no hummus. I added it to the "good" restaurant list and I'll remember it for the future, though I'm just bringing my lunch tomorrow.

Visited Laila in the hospital yesterday. sashagee told me before I got there that Laila was energetic and chatty earlier in the day, but by the time I got there she was listless and half-asleep. I waited around for an hour but she never got any more energy, but this morning right when I was finishing my breakfast, I got a FaceTime and Laila excitedly showed me Ariel and told me about the wires coming out of her head, so she had more energy at least earlier today. We'll see if she has more energy when I go see her after work today--I saw some pictures that Poppa and Nana took when they visited and she was more subdued then. We'll see.

I've been slowly reading a book that's much more interesting than my slow pace would indicate, called The Son and Heir. The book starts with the author finding an SS uniform hat in their attic and then expands to the story of his family--Dutch in Latvia and owners of a business empire, the clashes between his father and his grandfather over heritage (his grandfather was very proud of being Dutch and his father wanted nothing to do with the Netherlands), the way his father ran away to enlist in the German army to fight the Russians... I'm halfway through the book and the author is three years old, but his father has already divorced his mother, been put on trial for being an SS members and gotten off after only ten months in jail, avoided being sent to South America, and married another (already-married) woman. The book is only half-over. Now that the setup is all over I wonder when we're going to get the author's reaction to all of this?

Computer is still working. It's been over a month now without a single crash and the only thing I changed is plugging some things into the USB ports. Maybe it really was a faulty USB connector. Well, it saved me $2000, so I won't complain. Of course, now sashagee is asking for a gaming laptop so she can play Stardew Valley with mods, and Clair Obscur with the "disgustingly easy" parry mod. I've been looking around but I have no idea what a "mid-range" gaming laptop should look like so it's slow going. I'll gladly take any suggestions if anyone has any.

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.

I technically should have written this last week, but I wanted to delay it a week because of an extremely momentous event:


It was Laila's first day of school!

She had a good time and we had no incidents with her going away from us. Unlike some of the other kids, who cried when they realized that their parents were not going with them into the school, Laila just looked around a bit worried and confused. I imagine she was trying to figure out what was going on and if she needed to start crying too if the other children were reacting that way, but we left while one of the teachers was talking to her and when sashagee came to pick her up, she wasn't told about any incidents that had happened. And today, when we told her she was going back to school again, her reaction was "Yaaay school!!" so we had about the best possible first day we could.

She's only in half-day preschool at the moment because she hasn't been in any kind of structured environment like that without one of us present, ever--no daycare, no other school, and all her classes one of us was there. The first day at least went well. Hopefully the first week goes well.

In other good news, Laila is finally happy about using the potty for everything! She still has accidents--she's four, of course she does--but she'll run into the bathroom and sometimes we'll hear clapping and "Yaaaaay! Good job! Big girl!" from her and know we need to put another sticker on her chart. Her last bonus she got when she hit thirteen times was a princess tiara and a magic wand, both with Ariel the mermaid on them. Laila is still super deep in her princess phase.

Perhaps more interesting, in that it's atypical of four-year-old girls, is that she loves watching train videos, both ones of train crossings where the train goes on, and those videos taken from the front of trains--this one has gotten a lot of play lately--and she loves them so much that she's been requesting them even above Bluey or Hello Kitty Supercute Adventures. She's always been into trains, and even as a baby when we'd take her on the L she would get excited when a train would pull up to the station, so it's not out of character for her. But this specific interest has only appeared in the last month or so.

She's doing well in her swimming classes. She still throws all kinds of things into the pool, but last class was the first time she jumped off the wall and swam across half the lane to her teacher again.

Unfortunately, she had another seizure recently, but the doctors seem convinced that it's because she's growing and needs her medicine adjusted for her weight. They're raising it a bit and we'll see what happens. It's worrying, of course, but I'll just have to see what happens. But the doctors don't seem too worried.

Her language is improving, slowly. We have her in occupational and speech therapy--again, I think the state was incorrect in graduating her out of therapy when she was turning three--every week, and like I've said, they seem optimistic that she doesn't need too much help. She's been using more sentences, like "I've got my princess stuff!" and "I want to go to school," at least when she's not remembering that she's supposed to be staring at us and not talking to us. She definitely has some stubbornness and thinks, "Oh, abba and mama want me to talk? Then I won't!" But if we catch her while she's excited and doesn't remember that, well, then the words are starting to come out.

What other ways will she grow and change?

Yesterday, we went over to a friend's house and her almost four-year-old was using short but full sentences and interacting with her mother in a conversational fashion. All this morning, Laila was barely saying anything. She was throwing tantrums at the drop of a hat, and when we asked her questions she just didn't answer. She would wordlessly whine if anything went wrong and would refuse to do anything by herself, just crying or at most saying "need help! " if anything offered any resistance at all. It was so bad that sashagee called in to the pediatrician and asked them if we could have another speech evaluation. I'm convinced that there's something the first speech evaluator missed and she should have had speech therapy this entire time.

However, this post is much more hopeful than it could have been. Just before lunch, Laila had an accident and we had to spend a bunch of time cleaning her up...but once that was done, it was like the floodgates had opened. At lunch she wanted to spoon miso soup into her cup "all by self!" and she was chatty the entire rest of the day. On the walk to swim class she talked to me the entire time. She went back to using sentences and telling me about things. It was like night and day. She had apparently been using like 80% of her brainpower on holding everything in.

We're still going to get her evaluated because I think it would be good to have confirmation (or not), but we're not nearly as worried as we were. She's just extremely stressed from potty training, the poor girl.

How time flies.

The biggest news is that Laila is half potty trained! I say half because while she'll ask us to go to the potty, sit on the potty just fine and use it generally, she's a bit constipated because she's holding it in. I've read that this is pretty normal, that toddlers especially don't really understand and can feel like they're losing a part of their body. Laila doesn't seem scared--she didn't have any of the problems that show up sometimes like being scared of the toilet flushing or not wanting to sit because she's worried she'll fall in--she's just hesitant. She's always been an observer, someone who makes absolutely sure what's going to happen before she takes any action. It took her four months from standing up to walking, and after a couple months she put only the smallest amount of pressure on any surface she was holding on to. But it still took her a while afterwards until she would take a full step. I suspect this will be the same.

At her gymnastics class, sashagee ran into a nanny who said the kid she looked after was in that situation for a year! Hopefully it doesn't take Laila that long.

I've talked a lot about my worries about Laila's language development--speaking only, she understands us just fine--but she's been speaking a lot more. After she said "bread please" at dinner and I said, "Can you use a full sentence Laila please?" she said, "Can I have some bread please!" without any hesitation, so I gave her some bread. We can have more back and forth conversations now, and while she still only uses a few words at a time, we an have full exchanges of information. She'll say "Abba do" and hand me a pen, I'll ask, "What do you want me to draw Laila?" and she'll say, "Heart. All the hearts" and then I'll say, "I'll draw one, Laila, then you can draw another one, okay?" she'll say "mmhmm" and try to draw after I draw a heart. She'll follow along with multi-stage instructions. I can ask her what she wants for breakfast and get a reply. And sure, she's a kid and sometimes she'll say she wants eggs and do an excited dance in the kitchen when I start making eggs and then when I put the eggs down in front of her she refuses to eat them, but that's just being a kid. The important part is that she's starting to give us insight into her mind.

Speaking of her gymnastics class, she's still doing that and having a great time. As time as gone on, she's gotten more used to being in a situation where there's no family member around and a strange grown-up is telling her what to do. She's started doing somersaults herself around the house!

Since it's fall, sashagee has been dressing Laila in extremely fall clothing. This is probably the most obviously fall outfit she's been in, and one of the ones she likes the best because of the skirt:


She's slowly losing her baby face. Soon she'll be totally a little girl. This is why they say treasure every moment, because time only flows one way.

The one sad piece of news I have to report is that her seizures are more frequent now. She had a medicine change and it doesn't seem to be working, though part (most?) of it is also the potty training--apparently that's a seizure trigger in a majority of people. They don't know why, but it's definitely difficult for us to explain to her how important it is not to hold it in. She doesn't know she has epilepsy, she just "wakes up" confused sometimes to see abba and mama there holding her hand and being happy to see her. We have another appointment soon with the doctors to see if we can figure this out, and hopefully it's just a rough period at the moment. Until recently she didn't have a seizure for almost a year at home, only at the grandparents' house, and holding it in was the cause. If we can get past that, maybe we'll be in the clear.

What other ways will she grow and change?

Where does the time go?

When last we left our valiant hero Laila had just turned three and I wrote about how she loved gymnastics and drawing. Her gymnastics class is currently on hiatus and she still likes drawing, but her latest obsession is also writing. sashagee bought Laila a series of copybooks and pens with ink that fades over fifteen minutes or so, and Laila absolutely loves it. Basically every day she'll spend hours with either sashagee or me, wanting us to draw in her picture copybook or write in her numbers copybook. Originally she didn't really want to do much writing herself--maybe she's frustrated because her fine muscle control still isn't good enough to replicate our grown-up precision?--but as time has gone on she's gotten much more interested in writing numbers. She'll write 1 and 7 and 4 for minutes at a time before asking help. That's not true of letters yet, but give it time.

Unfortunately, I can't say the same for her interest in talking, but it seems mostly to be due to stubbornness. Both sets of grandparents say that she's talkative when she's at their houses, but when she's at home she'll often not say things because she knows we understand her, so she doesn't understand why we want her to use all these words. For example, lately I've been much more strict about wanting her to say "Can I have some [X] please" when asking for food, but because in the past I had focused on her saying please, she'll say "Pickle please!" and absolutely refuse to try to say the longer sentence. It's not because she can't or doesn't understand, because we've heard her say things like "May I have some bread please" totally unprompted when she was hungry. It's because she doesn't see the need to use so many words when she's never needed that many in the past. I can see we're in for some very exciting pre-teen and teenage years.

Her princess phase has also begun. A very important part of her day is wearing a "pretty dress" and she's constantly fishing old dresses out of her clothes hamper because she wants to wear them again. Her grandparents bought her a puffy red tutu and she's been wearing that every chance she gets. Just yesterday she wore it under once of her dresses like petticoats and had a very puffy dress. She was very happy with that one. Occasionally she also wants "cute hair" and "pretty nails," but much less often than dresses, and she'll often pull her hair out of the hairties after an hour or so, or pick off the nail polish. The pretty dresses never come off.

A couple weeks ago we went to the Argyle Night Market with Laila and they had free face painting there. We didn't think that Laila would take to having her face painted very well, but maybe we were wrong. She had a bee painted on her arm and she sat completely still for the entire thing:


You can see her in one of her pretty dresses there. She didn't mess with the bee at all until we had to wash it off later before she went to bed.

She throws tantrums occasionally, but they don't last for long. And she has a conscience, or at least a sense of when she's done something we don't like, because she'll (for example) throw something after we've told her not to and then immediately run off down the hall or to her room. I know why she's doing it--it's the classic "I do what I want, you can't tell me what to do!"--but considering our punishments so far are all stern talkings-to and time outs, I appreciate they're still effective enough that she doesn't want to experience them.

She's on a new medicine for her seizures, since the old medicine wasn't working as well, but the new medicine is working like a charm. She's even started taking naps again--she was skipping them for days at a time and I wondered if her napping days were over, but now she goes to sleep within 10 minutes of being put into her room and sleeps for a couple hours, and her latest EEG was much better than the one taken in January. Now we just need to convince her to talk!

What other ways will she grow and change?

And we all survived. Even Laila--somewhat to my surprise, she's still asking for matzah today after the holiday is over. By name, too! She just really loves matzah.

Last night I went to aaronhparker's combined post-Pesaḥ ḥametzathon and birthday part at Piece Brewery and Pizzeria in Wicker Park. I'm not usually much of a pizza person, but the pizza choices aaronhparker made--a standard red sauce and cheese one, sure, but also a mushroom white pizza and a margherita pizza. The white pizza went first with astonishing speed and the margherita pizza wasn't that far behind, and I even liked it! I told sashagee that she would have liked it, and that she should have come. It was just me since it took place at a brewery, but I guess the pizzeria part took precedence because there was a baby changing table in the men's bathroom. It could have been pizza for the whole family! As it was, I spent a lot of time talking to yoni-labow-5693413a, who was very interested in whether I was watching Tokyo Vice. I told him I had read the book but not seen the show, he encouraged me to watch it, we talked about kids (he and his wife are expecting a baby), we did vodka shots, it was a lovely time.

We went to two Seders as well. Last Monday we were at britshlez's place with just a few people for a small First Seder, and last Tuesday I went alone to aaronhparker's for another Seder. For the first one we didn't really do the after-meal portion of the Seder but we did for the second one, so I got at least one full-on Seder experience this year.

Laila spent most of the weekend at her papa and nana's while sashagee and I repainted the sun room, but the experience was somewhat marred by her having another seizure. This was much more worrying to us than to the doctors--it's been six months since her last seizure, and she's grown quite a bit since the last time her medicine was upped. By the time she was being checked out at the hospital, Laila had already gotten 100% back to her normal self--the doctors said that it can take up to 24 hours sometimes, so her recovering after only a few hours was a very good sign--and since she responded well to all the seizure tests they sent us home, with a prescription for a higher medicine amount. We even gave Laila back to her grandparents to finish out the weekend since it wasn't a serious problem, just scary in the moment. My mother said, "I'm too old for this" when we met them at the hospital.

Alright, Laila didn't take a nap today. Back to work.

Laila is two and a half years old!

In the two year and four month update I wrote about how I was worried about her sentence usage, but she's been making up on that score. We taught her "I want [x]" and she picked up on it very quickly, and we've been quick to enforce it too. Of course, she's a toddler, so she gets derailed halfway through. She'll point and say "This. Bite." and then I'll say, "I. Want. Bread." and she'll think a moment and say "I...want...mohlow!!! [marshmallow] and then point to the kitchen cabinet where sashagee keeps her hot chocolate supplies. She know what she wants and what she wants is dessert.

She started her early intervention therapy after her assessment which showed her as almost a year behind in speech. After the speech therapist's first visit, she asked sashagee if the assessing therapists told her anything when they did Laila's assessment, and when sashagee said it was over Zoom, the therapist did a 😐 face. She has since said that she's positive she won't be seeing Laila after her next assessment and that most of the kids she sees don't talk at all, or barely. The occupational therapist had a similar reaction and that one I was there for--she interacted with Laila for an hour, and then rather than telling us what her plan was to help Laila get on track, she asked us if there was anything we waned her to work on. Laila is clearly not nearly as bad as the Zoom assessment would indicate.

Lately, she has really taken to Judaism, by which I mean that she'll sometimes take two cups from her dish playset, put them side-by-side like Shabbat candles, cover her eyes with one hand, and start trying to sing. And her current two favorite books were sent to us by PJ Library--one is called Fridays Are Special, about Shabbat preparations including baking the ḥallah (her favorite part), and the other is called Hoppy Hanukkah!, about a family of rabbits getting ready to celebrate Ḥanukah. That book is still a little advanced for her, but she's asking to read it. Book progress!

Also, she's finally helping mama in the kitchen. After watching a Kimono Mom video about a フルーツサンド (cream and fresh fruit sandwich), she helped sashagee make the cream and put the sandwich together and then got to eat it while wearing her Totoro apron:


Once again, I can use the Chiyo-chan cooking icon.

What other ways will she grow and change?

sashagee: "Laila, what happened to your friends?"
Laila: "Uh oh!"
-On coming in this morning and seeing all her stuffed animals on the ground outside her crib

The actual day was yesterday but it was a pretty hectic day.

Last update was about language, and this update is a bit about language too. Laila puts words into short sentences, usually around food: "bite this" or "food please" and will sometimes say "me" or "you" when referring to people (though she has a bit of the child's confusion around pronouns since they don't refer to a single consistent person), but she still most often uses single words, which worries me. All the milestone lists for two-year-olds indicate a lot more sentence use than she does. I'm comforted by her understanding concepts, though. She'll start dancing to music and say "dance? dance?" indicating she knows that dance doesn't refer to a single song, for example, and just yesterday she woke up from her nap and was laughing in her room and then we heard "Help! Help!" She eventually fell back asleep, but when we checked on her at the end of nap time she had thrown all her stuffed animals out of her crib. Just recently when she knows she's done something wrong like trying to grab food off the counter, sometimes when we tell her no she'll self-exile to the corner and say "No. No no no" to herself softly. 🥺 It's important to teach her how to behave but it's still sad seeing her telling herself no.

All her thoughts are in her head, she just needs help getting them out.

She's really been getting into physical activities lately. She eats perfectly with a spoon, though she'll often keep swapping spoons around with one of us to see if we have the perfect spoon. And she loves dancing, either to music or not. She'll sometimes just start dancing spontaneously and saying "dance!" and her latest obsession is the Wiggles version of the Hokey Pokey. She'll often raise her hands over head and spin around, saying "Ooooooooooh the Pokeeeeeey." She keeps trying to climb on things and wants to go out for a walk every day, and lately she's gotten very competent at running. She still kind of looks like she's off balance while she's running and like she'll fall any moment, but she doesn't--she'll run up and down our hallway over and over, laughing the whole time.

She has opinions about clothes. Lately, she's really been into fall hats:

She looks like she's taking an Outfit of the Day selfie here.

On the other hand, toddlerhood is now in full swing. She'll keep doing things she knows she's not supposed to do because as a toddler she has very little self-control. As I write this she's trying to pull some plates off the end table and sashagee is telling her no. She knows she's not supposed to do it, but she doesn't really know why yet and she has a hard time resisting her impulses. It's normal but that doesn't always make it easier to deal with.

She knows her name at last, though. She'll even say it sometimes!

What other ways will she grow and change?

Edit: sashagee and Laila were just making homemade goldfish crackers and as Laila was looking through the oven at the baking fish, she said "Put the fish in my mouth." The words are in there!

Laila had an assessment today by the Early Intervention specialists, who we were recommended to by the hospital because of her history of infantile spasms. The long story short is that she has speech delays--not in terms of her vocabulary, which is average or above-average for her age, but in her usage of words. When talking to us, she sometimes won't use words to indicate her wants at all, just whining and hoping that we'll understand her. The specialist talking to sashagee (I was out of the room) said that Laila should not just be trying to communicating her wants, she should be eager to do so because she can finally talk in a way that other people understand. But she often doesn't.

The grandparents tell us that Laila is more talkative when sashagee is not there, so I do wonder how much if it is lack of necessity--Laila knows that she doesn't need to ask us "Up please?" when she wants to be picked up, and she doesn't need to ask for food specifically by name. At lunch today, after the meeting, I stopped counting "Please?" from Laila as good enough for a food request and made her ask for exactly what kind of food she wanted, and she did eventually say "Bread. Please?"...though not until after sashagee said "She saw the bread," which gets back to the concern. Laila understands the meaning of words, and will imitate our usage of them, but she's not synthesizing her own requests as often as they like.

The good news is that everything else is basically on track--her motor skills, her ability to focus on play that interests her (she spent a while drawing circles), her movement up and down obstacles, her ability to feed herself, her response to requests we make of her are all good. They're going to put her in weekly therapy to improve her language skills and recommended that we get her a play group--sashagee want to put her in gymnastics.

My parents are a little dismissive of the idea that Laila is so far behind (the evaluator said she had the asking skills of a fourteen-month-old). I do think that part of the problem is that we've been too indulgent with her, though. We were so happy that she got through her infantile spasms without suffering severe brain damage, and sashagee has been sick basically from eight months before Laila was born until this past May. She's worried that her being sick has sabotaged Laila and it's all her fault, but getting Laila more help this early is good, as is that this is really the only thing the specialist was concerned with. Laila knows the words, and she can use them abstractly. We just need to teach her that she needs to use them.

*lets out a long slow breath*



It has been a year. But a month and a half after we drew down Laila's spasm medicine to nothing, she still hasn't had any more spasms and she's developing normally. She's started saying "Wha dat?" and pointing at things, which means the house will never be quiet again. She gets very insistent that when she's sitting in our lap with a book, we read it to her. And we read it to her the way she wants it read, and if that's backwards, or skipping back and forth through the book, or stopping halfway through, well, that's what she wants.

She's going to be okay.