Eloise turns 3!

This last year has been a tough one for sweet Eloise and us as her caregivers. But there were still joyful times even amidst all of the pain and tears. So I decided to find a few videos from every month, to help us remember some of those good times. But also write a little summary of the highlights and lowlights each month brought.

I am still hoping some time in the near future we can look back on this year and feel relief that the season we are in is much easier than this past year was for Eloise.

Skip to the end if you want to just hear how we chose to celebrate this year.

Eloise’s second year in review

Her 2nd birthday

By the time she turned 2, Eloise love love loved swinging inside. She had stopped eating solids for a few month already, which meant she wasn’t in the mood for trying a cake the day of her birthday, but she was still cute and even a little chubby!

February 2023

In February, Eloise still wasn’t eating solids due to teething pain from growing her two year molars (in the end it took over 5 months to grow all 4 of them!). But she was very happy, enjoyed her therapies and stander, and we began to wonder if she might no longer feel pain. (One of her missing genes has a side effect in some kids in which they feel no pain.) With this hopeful time period, for the first time ever, we began to consider trying to take her to more intensive therapy weeks.

Well, I say she wasn’t eating solid foods, but she did take one short break to eat normal food when we visited the hospital for one of her regular checkins with her medical team.

March 2023

One day in early March, I left Eloise on the couch for a few minutes to let the puppy out. She’s not mobile, so this has never been an issue. Still, somehow in that short time period she managed to roll off the couch onto the soft carpet and break her leg. Her pain reactions definitely returned — she let us know she was not okay. This is when pain started being a daily thing — and things started to get hard.

Carrying around a kid who already throws herself everywhere, but now having a cast attached to one leg was not easy. Especially when you weren’t getting enough sleep and she was crying a lot. Shortly after she got her cast, I wrote Tired Parent Alert, because her sleep suddenly became awful. After that week, Brian and I began to alternate who was on Eloise duty at night so we could both at least get a few nights of normal rest each week.

One lovely thing that happened, however, is that, nearly one year after we started renovations, Eloise’s water therapy room was finally ready. Just in time to start rehabilitating her healing leg. She love love loved splashing and swimming in the water. We were so grateful.

April 2023

In April, after many many many hours of research and phonecalls and emails and tears just to find any travel insurance provider that would cover Eloise’s medical costs in case she had a seizure while we were in the USA, we took a risk and took Eloise to the United States to visit family.

Eloise met her aunts and uncle and cousins on both sides and most of her grandparents for the first time ever in person. (She has a cousin a few months older than her who considers her “his baby”. It’s so adorable.)

And, as a surprise, while we were waiting in the airport to leave Estonia for the US, she began eating normal food again and did not stop the entire trip. She ate everything in sight and began crying if we didn’t give her enough food. And, as an added bonus, she suddenly and magically began sleeping through the night.

She was so happy during the trip and we were so grateful for that time — until she somehow got a stomach virus a few days before we left to go back to Estonia.

May 2023

In May, Eloise went in for a regular checkup with her team in Tartu. At that point, her doctor decided to wean her off of sodium valproate — leaving her on only 2 anti-seizure medicines. We were so excited. During her yearly MRI, they also found that Eloise had fluid trapped behind her ears because her tiny little ear tubes were unable to drain it. That began my quest to find an Ear specialist to help, because I began wondering if her sleep problems — which reappeared after our trip to the USA in full force — had something to do with her ears.

June 2023

One thing that did not change after her trip to the US is her return to eating normal food. She kept eating and drinking like she didn’t take a 5 month break.

But in June, Eloise’s sleep continued to get worse — she would sleep a few hours and then stay awake for a few hours all night long. There was clearly pain for some of it. We tried different pain relievers, which didn’t help. We got her a few different sleeping medicines prescribed by her doctor, which also didn’t help.

Her sleeplessness was so extreme that Brian and I got rid of our one person on Eloise duty. We began sleeping in shifts — I went to bed early and slept while he took her the first 6 hours, then we switched. That way we could both get at least 5-6 hours of sleep.

On top of everything else, she began having frequent crying episodes that neither of us knew what to do with. I spent a lot of time and effort going to specialists before she finally got scheduled for ear surgery, only for it to get canceled because she had a cough. We were so desperate for some relief.

July 2023

Thanks to God, supporters’ prayer, and many many emails, messages, and desperate phonecalls, Eloise finally got her surgery in early July in Tartu — adenoid removal and tubes in her ears. After a few weeks of pain and recovery, her sleep did get a little better — she would only wake up for 45 minutes at a time rather than 2-3 hours. But there was clearly more to her sleep problems than just ear pain. It wasn’t the magic fix we were hoping for.

By July, it was quite clear to us that Eloise’s gross motor development had slowed or reversed considerably. The previous year she had happily enjoyed sitting and standing for longer periods. We were also hopeful that the fluid in her ears had been affecting her balance and that was the reason for the regression, but once she was healed from her surgery there was no change.

August 2023

In August, after months of making sure my belly never made it to social media, we finally told the world we were expecting Eloise’s baby brother. (If you missed it and, for some reason, want to read the entire 6 part series, you can start with part 1 on our pregnancy losses here.)

With a baby soon to come and Eloise still not sleeping well, I was becoming increasingly panicked at the thought of extreme sleeplessness for now months to come. (If any of you have struggled with insomnia or not getting enough sleep, you will know all too well how you can quickly turn into a stressed, panicky human when you don’t get enough rest.) So a few weeks before Baby K was due, Brian fully took over Eloise’s nights to help me get a little extra rest before I had to take care of Baby K on my own after his birth.

Eloise still had seemingly random periods of crying during the day and we had no idea what was wrong. Thankfully for us, or, more specifically Brian, Eloise got approved by the government to order her a special medicine that usually helps kids that are not neurotypical that struggle with sleep — clonidine.

September 2023

Eloise’s baby brother, Baby K arrived by his own choosing on September 4, the day after he was due.

Eloise didn’t seem to notice. She was more interested in his bright yellow carseat handles when we took him home — which is still true today. 😂

Also, she had her first dose of Clonidine, her new sleep medicine, the week Baby K arrived. It was almost magic. For the most part, even months later, 5-6 days a week she will mostly sleep through the entire night. That week Eloise started going to stay with her babysitter during the days. And then around that time Eloise’s screaming really began in the mornings before she left, and in the evenings when she came home.

Not to mention, the week Baby K and I came home from the hospital, she caught a cold. Then Brian got it. Then I got it. Then Baby K got it. September was not ideal

October 2023

In October my parents came and were able to help out a few days a week in October and November. But with October came more viruses. Brian was still taking full responsibility for Eloise as I took full responsibility of Baby K and puppy. Though Eloise was sleeping better, she was clearly in some sort of pain or physical discomfort in the morning and at night as she would arch and throw herself constantly. Brian was really getting worn down. Happy Eloise seemed like someone of the past — she was in pain or crying a vast majority of the time we saw her. (Thankfully, her babysitter said most days during the day she was okay.)

November 2023

Officially, Eloise had been seizure free since November 1, 2022. While that truly was amazing and borderline miraculous, we were still worn out and desperate with Eloise’s consistent pain episodes in the morning and evening. We took Eloise to the her hospital to have her doctor run tests to see if they could find anything about the source of pain or why she had regressed over the last year. They ran test after test after test and found absolutely nothing. But they did decide to wean her off one of her anti-seizure medicines — Clobazam.

The day Eloise and Brian came home we suddenly realized that it was quite possible that her pain and screaming only in the mornings and evenings might actually be related to Clobazam. It’s a strong benzodiazepine that is highly regulated and very addictive. We realized, as we ran through our memories, that she often calmed down in minutes after she had her medicine in the mornings and evenings. So we were hopeful that her pain episodes might get better after she was off of it entirely. With that in mind, we started the wean — which really sucked for her. So much crying. So much pain.

Her little Baby Einstein player my parents bought her turned out to be a lifesaver. At times, if a pain episode was beginning, that music and those flashing lights would distract her enough to stop the crying.

But, something we didn’t expect happened. After she took her last dose of Clobazam, Eloise began to sit independently again. The year before, Eloise had been able to sit independently for 10-20 minutes or more at a time. But by November, she had declined to the point that she would often only sit for 30 seconds before throwing herself over.

Now, though, no longer taking Clobazam, she was suddenly sitting for 30+ minutes again. Everyone noticed the change.

December 2023

By the end of November, after she was finally getting over her pain from weaning Clobazam, Eloise got sick again. And stayed sick through all December. We got sick that month, too. Everyone was miserable. She also got an ear infection on top of that.

Then, finally, halfway through the month, she had a good day. It was maybe her 4th “good” day at home that we could remember since Baby K was born. I wrote about it on instagram. Then, within a few minutes of my update, she had a really bad seizure — her first in over a year. Luckily we were able to stop it with rescue medication and avoid the hospital, but it still was heartbreaking.

A few days later, though, it got worse and Eloise somehow caught a stomach bug — sapovirus — and stopped eating and drinking. She quickly became dehydrated, which then triggered more seizures. Brian ended up going to the hospital with her. When he came back, after months of things being really really hard with Eloise and him taking almost all the responsibility, he realized he was on the verge of a mental breakdown. So we realized we needed to make some changes to ensure Brian did not burn out.

January 2024

We decided to get Eloise a feeding tube to help her get through periods of illness and hopefully avoid hospital visits due to dehydration. Since returning from that surgery, it may hav been the catalyst to start the happiest Eloise stretch we’ve seen in many many months.

The happiness has helped us so much, even if she did have to go to the hospital again just a week ago for a really bad seizure (we think it may be because she’s gained a bit of weight after the tube, so we needed to increase the dose of the only anti-seizure medicine she’s on now, Stiripentol). She’s still had some bad days or afternoons or mornings or everything in between, but she’s been more consistently happy.

Just this last Sunday, the day before her birthday, we were at a friend’s house and she sat by herself on the floor and happily played and sat independently for probably an hour. Brian and I were both happy shocked.

But, as seems to be typical in life with Eloise, as I write I am already coming down with a new virus, which means Eloise and the rest of the family will probably get it soon. So our happy period may pause again. But, thankfully, this time we have a feeding tube so we can at least give her extra vitamins, fresh breastmilk with my virus-fighting antibodies, and know she’s at least getting a nutritionally balanced diet with plenty of fluids. So maybe she won’t be sick quite as long.

Celebrating Eloise’s birthday

It’s always been a struggle for us to know what to do with Eloise for her birthday. She doesn’t notice nor care. Brian and I have also never really celebrated our own birthdays or holidays because we don’t care.

So what do we do if she doesn’t care and we don’t care?

Well, this year at least, we decided to do a little reverse gift giving. We have been so honored by all of the encouragement and prayers and love and resources we have been given over the years. So we decided, for her third birthday this year, we would give back to 3 other families who could benefit. All 3 ended up being single moms with disabled kids because those were the needs that popped into our awareness.

There was still a celebration

Though we had no birthday party planned for Eloise, she was still celebrated.

Eloise has an amazing babysitter, who got her a cake and a birthday present. We also got her a cake and a few presents. And a friend also made her a cake. Which means on her third birthday she had not one, not two, but three cakes.

And, of course, we ended the evening with a bit of a dance party. Because Eloise loves music.

Eloise’s birthday had me thinking

There are many families out there, especially those with only one parent doing the caretaking, that need far more support. Be it time or finances or both. When I see others struggling like us, my heart breaks and I wish there was something I could do. We have been incredibly, incredibly lucky at the online community that has built up around supporting Eloise with love and prayers and sometimes finances.

But I was wondering. There are so many incredible humans out there like yourselves reading this. And so many other families in need beyond ours. Would you consider, in honor of Eloise’s birthday, giving in some way? I had some ideas, but maybe you have some, too.

Give to epilepsy research or charities

You could give to a charity like Dravet Syndrome Foundation. Eloise’s missing SCN1A gene is what causes her seizures. Kids with mutations or deletions are often diagnosed with Dravet Syndrome — which is currently incurable and the worst genetic epilepsy syndrome currently known. Because the seizures for kids can be so extreme, research is desperately needed. And the medications and treatments that come out as a result are often used for epilepsy patients of all syndromes. So it makes a huge difference when you give.

Give your time to help a family

You could help a family with a disabled child by making a few meals or cleaning their fridge or watching their kid for a few hours.

If you don’t know one, but have some time to offer, send me an email to eloisethetinyfighter@gmail.com and let me know where you live. I can then take a day on social media to list the places where people have volunteered to help but need families to help and see if we can get you all connected.

Give financially to help a family

Or you could give financially to a family with disabled kids and let them spend the money on whatever it is they want. (Trust us, ordering meals has been a mental health lifesaver more than once, even though it seems like such a frivolous thing to spend money on.)

A final option, if you don’t want to give to Dravet but would like to give financially to a family who needs it but don’t know any, if you send money to me using Wise.com (Brian and I used to work at this company — you can use it to send money beween nearly any country in the world for cheaper than your bank), I will happily send that money to families with disabled kids who could benefit from a hand up.

Let us know!

If you decide to participate, we’d love to hear what you decide to give to. Leave an anonymous comment on the blog, leave a comment on facebook or instagram, or send me an email to eloisethetinyfighter@gmail.com and I can leave your name off if you would prefer.

I would love to then write an update later what all happened (well, if anything happens) around the world thanks to Eloise’s third birthday.

Sending love from our family to yours,

Photo by Aljona Selivanova