16 months: Renovations, toys, and equipment

It feels like Eloise’s development has slowed down a little this last week. Other than the fact that we can now cut several of her finger nails without screaming (thanks in large part to her beginning to touch different textures with her hands, which helps her get used to something touching them).

And the fact that she hasn’t had a seizure for over a month now — the longest she’s gone without them since they started.

Regardless of it seeming like her development is slowing down, though, there’s a lot more stuff that is speeding up.

House demo project

You might have seen, but we ended up quickly getting things moving on making room for Eloise’s water therapy in our home. Our original plan was to buy an electric, Estonian version of a hot tub (not a true hot tub because ours will be metal lined, no jet streams, no lights, and with removable seating) and put it in our backyard in the garden to use all year round.

For a bunch of reasons, unfortunately, our garden idea wouldn’t work. Which meant we needed to find a place to put it indoors. And, well, there was only one spot that worked — a part of our house that has been crumbling for years with its leaking roof, rotting floors, uninsulated walls, and unheated.

So we did the exact thing we didn’t want to do, and started a huge renovation project just to make sure — whether there’s a pandemic or she’s having a bad day — we could do water therapy with Eloise every single day of the year.

We’ve definitely asked ourselves on more than one occasion if this is worth all the money we have to spend to make it happen. And then I’m reminded of all the stories I’ve heard of kids who finally started walking after consistently swimming and practicing in the water. And the podcast story I accidentally stumbled across the other day of a man completely paralyzed after a brain disease but then, after very very intensive therapy, he’s regained most of what he lost. All of this reminded me, yet again, that with therapy done often and early, maybe far more with Eloise is possible than we imagine or dream.

So while the price tags make us want to cry, I still feel grateful that we can make this happen for her. For us.

Several people wondered how they could help or donate to the project (and, oh man, it’s hard to express just how much anything helps) and so we wrote out a post with more information on our renovation and plans, as well as how you can give. (As a heads up, we plan to actually give half of everything donated to Ukrainian refugees in Estonia, unless donors ask us not to.)

To intervene or not to intervene

We used to feel pretty lucky with Eloise’s sleep. I know parents of “normal kids” who still wake up every few hours at night, not to mention the fact that a lot of young babies and toddlers think the day starts somewhere around 4:30 or 5:00 in the morning. For Eloise, by around 9-10 months, she would only wake up once per night to eat, around 4 in the morning, and then sleep in until 8 or 9 in the morning.

Around the same time, when Eloise started solids, we also felt pretty lucky (on top of feeling so much relief that she grew out of her very very severe food intolerances). Solids was one area in which she was keeping pace with her neurotypical peers — every day she was eating the recommended amount of solids or even more.

A bit of a bummer for us, those two areas have been quite poor as of late.

As far as sleep, for the past several weeks now, Eloise struggles for 30-60 minutes to fall asleep in the first place, wakes up an hour or two after she goes to bed, and then can’t fall back asleep for 1-3 hours no matter what we try. On top of that, she then wakes up at 6:30 in the morning. Luckily for us, she seems to have returned to her twice a day 1+ hour naps a day, but she’s still getting 2-4 hours less sleep per day than she used to. And so are we.

And solids? Some days we are lucky if we can even get her to have a small spoonful of peanut butter and a couple of bites of yogurt or caramel pudding the entire day. This kid is currently living entirely off of fresh breast milk and Jimmy Joy meal replacement powder. Her eating has been poor (but not this poor) since she started growing in more teeth at the end of January. That’s a very long time to not eat much. At the moment, she’s either slightly gaining or maintaining her weight from week to week.

So what do we do?

Good question.

If she was a neurotypical kid, we’d blame all of this on teething. But she’s not a neurotypical kid. So we know for a fact that most kid with genetic issues eventually get on sleep medications for sleep troubles. And getting a feeding tube for feeding issues is a really common practice.

The thing is, if it really is just teething pain, then it’s temporary, and things will — hopefully — return to normal. We’ve heard from more than one parent of a kid with disabilities that they went through 4-6 months of hell with teething pain. “Be strong — you just have to wait it out,” they’ve said.

Many days she’ll have a period of time where she cries and wiggles in pain. Most days she pulls at her ears and drools a lot. She constantly puts our fingers in her mouth so she can chew on them. When she accidentally hits one of her teeth that is growing in, she will pull back in pain very quickly. And then, when we give her the right dose of paracetamol (tylenol) we notice her pain reactions lessen for the next few hours. If we give her paracetamol right before bed, she often won’t wake up until the pain medication wears off 5-6 hours later. All signs of teething pain.

Which means we’re 100% certain that she’s in pain from her teeth growing in. However, we aren’t 100% certain that all of her sleep and eating issues come from that pain.

So we wait. And hope that some day, hopefully sooner rather than later, these 4 molars that she’s been growing since mid February will finally cut all the way through her gums. And that better eating and sleeping will be in her future.

Getting closer to our vacation goal

We’ve gotten a bit braver with getting ourselves and Eloise out, lately. Estonia has been almost COVID19-free for the last two summers in a row so we wanted to take advantage of there being way less diseases out and see if we could get Eloise used to going places. Little by little, of course.

So last Saturday Eloise and I went on a shopping spree in her stroller. And, to my shock and surprise, she made it.

We actually went out, in large part, to find some fun vision-friendly toys to help develop her eyesight. (Most patterns and everyday surfaces are too overwhelming for kids with CVI, so it’s important to get stuff with lots of light, reflection, and very simple contrast.)

I even hung up some of the new shiny decorations for Eloise to have something to look at.

New equipment for Eloise

One struggle we have with Eloise is buying her furniture.

What do I mean by furniture?

By around 6 months old, most neurotypical kids can sit unassisted and can crawl everywhere. As you mayhave noticed, Eloise can’t do either of those things yet. Which means she needs seats and bathtubs and potty chairs that help her stay upright. The problem is, normal kids furniture like this is made for babies under 6-9 months old. Furniture made with more support for older kids is generally meant for kids with extreme hypotonia (i.e. they cannot lift their legs or hold up their heads by themselves). But equipment like this is too supportive for Eloise — she needs stuff that helps her stay upright but doesn’t do all the work for her. Which means she’s in this awkward in-between stage — regular kids’ furniture doesn’t have enough support, but disabled kids’ furniture has too much.

So, after asking for recommendations on social media, I thought we’d narrowed down brands to a new high chair and new bathtub for her.

• The Stokke Tripp Trapp (or Joie 6-in-one) for a chair and the toddler-sized Shnugge bathtub.

But one of the things with Estonia is, because it’s such a small market with a population of only 1.3 million people, you normally can’t just go in person and try stuff like this out. You order online.

If she was a normal kid, that would be fine. But we needed to know, for sure, that she fit.

So a local gal gave us a tip that there was a big department store (well, big for Estonia) called Babycity that might have a few different high chair options. So I went by Monday and found that, indeed, it did. Yesterday we took Eloise in person and, to our surprise, we found a bathtub with great support, a potty chair with great support, and a high chair that wasn’t pricey but she actually fit in. And got them all.

Now we just hope she doesn’t get too tired out in her new high chair (when she has to work her muscles too hard, she starts crying or just leans forward).

And we are going to retire her baby bathtub to her new sensory play tub where I can put in various textures of things to help her explore the world and create new neural connections.

And for all those who were waiting for this post to come out earlier, Brian and I both woke up with a headache and nausea (though no fever, thankfully). So I spent the first part of the day in bed until I found a medicine I could actually keep down and made me feel better. Brian, unfortunately, wasn’t so lucky. I’m hoping it’s a temporary bug and Eloise can avoid it, but we’re a little worried if it might be more. And, well, if Eloise might catch it and seizures along with it.

But all we can do is just, well, keep living life.

Speaking of that, I’ll be starting my transition back to 4-days-a-week working next week. I’m not sure what blogging will look like after that, but we’ll see.

All our love,

Mallory, Brian, and Eloise