45-46 weeks: Still much to celebrate

You know, seizures suck, but we are determined not to let them steal all our joy. This little munchkin is still adorable and incredible. So it’s time for an actual update, even if it is two weeks rolled into one. Because I want to celebrate the great stuff that’s been happening, too.

Her eating (solids) is going great!

It’s clear she has another tooth coming in. We can now tell not because we can see or feel it, but because a few weeks beforehand she’ll suddenly stop eating much from the bottle. So while her milk intake on some days is scarily low, she continues to eat a lot of solid purees with no problem.

This is all of the leftover milk from just 2 days of Eloise barely taking any bottles. When she stops eating so much from the bottle because she has a tooth coming in the next few weeks, it’s a pretty drastic change that happens overnight. For example, she’ll go from eating 120ml in 10 minutes on one day to 3ml in 45 minutes the next day. Now we no longer worry because we know why it’s happening, and we also know that once her tooth comes in, she will go back to normal. (The only problem is that her teething process seems to take like 3 weeks, and her rest period is more like 1-2 weeks before the next one comes in. 😂)

And, of course, not only is she eating a lot of solids — the amount recommended for her age — but she is not having reactions to any foods now. Incredibly, she’s been able to handle cow’s milk, egg yolk, fish, nuts, wheat — you name it.

I feel like such a proud mom. I really never imagined we’d get to this place of being able to eat everything so fast. Of course, she is still only eating purées and I’m pretty sure she still has her tongue thrust reflex. If I give her anything a little harder (like tiny bits of sliced almonds), it’s a real struggle for her unless they are super super tiny pieces. So if anyone has some good resources on how to help transition your little one to bigger chunks and help them learn to chew (or what foods help with that), let us know.

This had me laughing so hard. Brian really struggles when she wipes food all over her face and, well, sometimes it cannot be stopped. 😂 Needless to say, when Brian came back to take over feeding her, his face fell.

She loooves her little piano.

As I’ve noted on Eloise’s Facebook group and Eloise’s Instagram account, she love love loves her little piano. I just can’t get over how cute it is.

Not always, but often if she’s fussy and we get out her little piano she just lights up.

I sent an update to family while she was jamming away on her keyboard one night when she was in a particularly bad mood.

We’re working on prioritizing ourselves.

I’ll write more on this topic in the future (as a follow up from writing about teamwork). But, for now, Brian and I are continuing to think through and talk through how we can make our life with little Eloise work for the long-term. Part of that is noticing what is draining our energy and either getting rid of it or finding ways to make it better. And another part is just finding activities that we can work into our lifestyle that help us feel better mentally or emotionally, or work towards a goal we have.

Brian has now played something called airsoft a few times. When a game happens, it’s an all day event where he travels somewhere in Estonia and he and a bunch of people play a game that’s a bit like paintball. It helps get him a little exercise, contact with other humans, and, most importantly for him, gives him an incentive to learn and use his Estonian — which is a goal of his.

This one is a surprise for a special someone.

Rather than getting out of the house, I have been staying in it by looking for excuses to make paintings for people. I realized that painting, to me, is the same as problem solving and gets my brain working in a way that really gives me a lot of energy. I look at a piece of artwork someone else has done and then have to figure out how to make the colors, what order to add them in, and use trial and error in the process until I get the painting to a place that feels just right — even if it isn’t identical to the original. Gosh, I wish there was a way in Estonia I could make a living at painting copies of other peoples’ paintings. Alas, though, there isn’t — unless I came up with my own style and subject matter and worked really really hard to become famous. (Which I have no desire to do.)

Seizures are just a part of our rhythm now.

As I mentioned in our post on teamwork, we tried to go out to the Tallinn Old Town Christmas market ojn the day before my parents left to go back to the States. Unfortunately, though, Eloise had a seizure on the way there and threw up all over herself and just could not stop crying.

And that’s the reality of living with seizures. The seizures she seems to be having all too regularly are, I’m guessing, autonomic focal (partial) seizures. Basically, they are short (normally less than 60 seconds), only involve one part of her brain which mean she’s at least partially conscious during them, and often come with vomitting or nausea. Thankfully, with anywhere from 50-75% of the seizures she has, she goes right back to normal right after one. But, depending on the day, she might fall asleep immediately after around 25-50% of them. And that just makes the day a little hard to figure out because her nap and eating and physiotherapy and diaper change schedule just go completely out of whack so it’s hard to know what is best to do next.

Our sad family photo. I didn’t want one of Brian and I smiling because that would not match our emotions. I wanted it to look like exactly how we felt at that moment — because there WILL be Christmases in the future in which we will be able to smile, and that will match how we’re doing.

She’s still developing. Some.

We knew she’d either slow waaaaay down in her gross motor development or stop completely by now. Which is why the fact that she’s slowed down hasn’t really worried me. It’s what she’s no longer doing that makes me take a little pause. She used to constantly roll to her stomach the moment we’d lay her on her back but since her big seizures that sent her to the hospital, she’s basically stopped. I think we’ve found her rolling to her tummy maybe twice since then. But that’s it.

I would be more concerned, but our kind, empathetic physiotherapist that visits our home insists that Eloise is still developing every time she comes to see her every 2-3 weeks. She points out the things Eloise is doing that are new, so that does bring some relief. And she had also said, before we even mentioned her no longer rolling, that it’s normal for kids to stop doing a skill they have learned or even regress at times.

*Our kind physiotherapist, Eliia Laats from fysiopai.ee showing a new semi-sitting position to use with Eloise.*

Plus, I do have to admit she’s definitely holding on to objects a lot more if we offer them to her and that’s something she was not doing a few months ago. I can’t say she’s really playing with them, but she’s at least grasping and holding onto them for a short bit. So we will take what we can get.

She has three favorite toys. The keyboard. The rocketship rattle. And this squeaking thing. (She sure loves to suck on those ears.)

We’re trying to introduce new stuff to make her future better.

At the moment, Eloise does 90% of her 💩 on her little toilet. And the other 10% of the time she is ready to poo, Brian and I usually noticed her little grunting start and get her to her toilet in time (which means it’s very very rare for her to poop in a diaper).

But pee is another story. I’m hoping that cloth diapers may help us potty train her eventually, since she may eventually notice feeling wet in them (although it will be a long time before we really try to potty train her). Which is why I’m pretty proud of the fact that in this last month we’ve figured out a way to make cloth diapers work for us without adding too much extra work. It’s a little thing, but I’m hoping it will make a difference.

Months ago, we also decided to try to start using something called an AAC device around this time for Eloise. Basically our plan has been that we will pick out a few activities and sentences we say often like “Let’s go potty.” Or “You are happy/sad right now.” Then we will program them into an expensive app made just for non-verbal communicators. Once we’ve got them set up in the app, we will click on the buttons on a tiny little iPad in front of Eloise and the app will “say” these sentences. If we consistently model these things for her, depending on how or if Eloise keeps developing physically and mentally, then she may eventually be able to use the iPad and app to “talk” to us. Like, in a year or two.

Though our plan had been to start when she was 10 months old, we’ve been a bit overwhelmed with her seizures and just keeping up on life stuff like laundry and dishes and cooking. But I’m hoping sometime soon we will make the time to sit down and get started.

So, really, other than seizures, so much is going well.

I think it was especially important to me that I try to put together this update to remind myself that there’s so much that’s going right outside of her seizures.

Brian is especially gifted at knowing exactly what to do to get this little girl to giggle.

A friend was recently asking me about some of her old problems and I realized that, really, SO much has gotten dramatically better for Eloise.

Her extreme reflux is gone.
Her extreme pain due to food intolerances is gone.
Her food intolerances (which seemed to be in reaction to absolutely everything) are completely gone.
Her refusal to take a bottle is gone.
Her refusal to take food from anyone but me is gone.
Her struggle to nap more than 32 minutes (or nap anywhere but on me) is gone.
Her struggle with weight gain is gone. (Even with all her vomiting the last few weeks she is still steadily gaining and she’s on target to triple her weight by her first birthday.)

I mean, these were all issues that seemed like they had no end in sight — many of which were associated with her deletion. Thankfully, though, we got a ton of good advice from people like those reading this blog and, with a lot of time and effort and prayers, so much of those issues are just gone.

What a gift.

Because dealing with the mental toll of seizures is enough on its own without adding any of the problems she had previously.

Regardless, it’s Christmas week so I thought we’d leave you on a high note. If you haven’t yet seen this video of Eloise “singing” with me, you’re in for a treat.

The day this was taken was a seizure-free day. Woo hoo! But she was also fussy for Brian. The only thing that seemed to consistently calm her down was, oddly, me. So during one of those times when I was trying to get her back to normal, I decided we’d take a little break to try out some simple Christmas carols. Imagine my surprise when this happened. I mean, when we went to the hospital they called Eloise a singer, but who knew how right they were. When she started belting out those notes, I yelled for Brian to grab his phone. We had to get it on video. This just melts my heart with joy. I thought it might do the same for you. (Also, it turns out I was so distracted by how cute she was that I forgot to pay attention to what I was singing. 😂)

Merry Christmas 🎄 a little early from Eloise. 🥰

Blessings and Merry Christmas to you and your dear ones,

Mallory, Brian, and Eloise