22 Months: Putting ourselves back together again

I had been pretty good about writing weekly updates about Eloise, then they became biweekly updates, then monthly updates. Then I went back to work and they disappeared altogether. But I hope to begin them again because it always helps me celebrate and savor all her gains.

If you haven’t been following, gosh it’s been a heckuva last few months. Here’s the quick rundown:

• May: 0 seizures + Eloise is finally starting to tolerate strollers and carriers so we can begin thinking about going out places for the first time since she was born.
• June: 0 seizures + I start transitioning back to work. Eloise is just happy, and we start taking her out little by little to explore as we have time.
• July: 1 seizure + Eloise’s best month ever. She is happy. We are happy. Although we have both started work. So we take her on a “work-cation” for a week in Tartu and have such an incredibly good time. She visited her first restaurants. I cried from happiness. Our trip ended with an unplanned hospital stay as Eloise develops something that, in retrospect, are what I believe to be a harmless neurological thing called “shuddering attacks.” (See the adorable video compilation of Eloise at 18 months.)
• August: 5 seizures + Life is still pretty good for Eloise, though Brian and I realize we’re struggling. We find a puppy for Eloise and begin preparing mentally to raise him to eventually become her therapy dog.
• September: 20 seizures + We take our first family vacation — Eloise comes down with Roseola virus on the first day and is sick the entire time. 😫 Her seizures increase, too, so her doctor changes her medication. We end up traveling by ambulance to the hospital emergency twice in one week due to really long, bad seizures we can’t stop at home. Her doctor changes her medications yet again. Even though she’s suddenly sitting pretty well, Eloise begins to really resist physiotherapy and will cry uncontrollably during her sessions. We bring home her new standard poodle puppy at the end of the month.
• October: 621 seizures + Her seizures continue to increase daily until it’s a steady storm that gets worse and worse — some days Eloise can hardly stay awake and the seizures come as frequently as every 7-10 minutes. We drive to Tartu for what I assumed would be a short hospital stay but turned into 2.5 weeks. Eloise has anywhere from 40-70 seizures per day, even with rescue medications. We were afraid.

I mean, I thought I had mostly stopped writing since I wasn’t doing these updates, but then I realized that wasn’t quite true. For any of you that are newer to our journey and want to go back and read the archives, here are the blog posts from the last 6 months or so.

And, if for some reason you want to read even further back than the spring, you can keep loading all of the previous blog posts on this page here.

Apr 29 15 Months: Digging roads for Eloise
May 3 Project: Take a family vacation someday
May 7 She works so hard
May 13 15.5 Months: Eloise the Explorer
May 24 Fundraising renovations for Eloise
May 27 16 Months: Renovations, toys, and equipment
Jun 01 Two sides of the same coin
Jun 17 16.5 Months: Living the dream
Jun 19 Attending our first birthday party
Jul 05 17 Months: Our Golden period
Jul 17 Off to the hospital we go. Again.
Jul 21 The day after a big seizure
Jul 31 Apparently it’s time for a dog
Aug 07 18 Months: What a ride
Sep 01 Finding Eloise’s puppy
Sep 11 Practicing for a vacation (about our July Work-cation)
Sep 17 Sent to bed with no supper
Oct 16 No rest for the weary
Oct 22 Her worst seizure week ever
Oct 31 Celebrating Tami — A life well loved
Nov 2 Her seizures stopped by I’m crying
Nov 17 I’d like to stop worrying now, thanks
Nov 24 I think we’re turning a corner

Which takes us to today.

Most of November in a nutshell

In November Eloise had 0 seizures. Or, well, zero seizures that I saw. Because apparently they recorded one on her EEG the day before we left the hospital in early November. But either that was the part of the EEG I wasn’t there for, or I didn’t notice it.

Regardless, how we got to no seizures is that on October 31st, Eloise’s doctor added the third medicine in a trio of medicines known as a miracle combo for kids with Dravet syndrome (Sodium valproate, clobazam, and stiripentol.) That night was the last seizure I saw in her.

Does that mean we can rejoice, that they’ve found the right combination and that she will be seizure-free for life now? Unfortunately, no. Because she has a gene called SCN1A that is deleted in its entirety on one of her chromosome sets, it means with current medical advances, there’s around a 0% chance any combination of medications will control her seizures for life. That being said, there is a chance they may help a lot, at least for awhile.

However, because Eloise’s situation was extreme — for over a week she was usually having a seizure every 7 minutes when she was awake — her doctor had already planned to start Eloise on a ketogenic diet while we were in the hospital. So, one day after her seizures stopped, we began keto. Strangely, though, within a few days, Eloise started refusing to do much eating or drinking. I was pretty sure it wasn’t the keto menu, which tasted better than the regular hospital menu. So Brian and I did some poking around in her mouth and, sure enough, we found two teeth beginning to poke through Eloise’s gums. Which meant the only way we could continue with the Keto diet would be to put Eloise on a feeding tube because her eating gets really bad for 2-3 weeks with teething. After some discussions, Brian and I decided we weren’t ready to try a feeding tube yet, since kids at this age especially can lose skills very quickly. So, with the seizures under control at that moment, we stopped keto and, a few days later, Eloise and I finally returned home.

Sadly, though, going home wasn’t quite what we had imagined. Our little Eloise was sleeping. A lot. As in, almost all the time. She was also clearly in teething pain that we couldn’t seem to get her relief from. In fact, I feel like we’ve tried everything under the sun — paracetamol, ibuprofen, lidocaine, teething gels, silicone teething brushes, homeopathic remedies, amber bracelets, teething toys, cold/frozen teething toys or fruit or breastmilk popsicles or washrags — you name it, we’ve probably tried it. But the sign that scared me the most is that she didn’t even want to eat our coffee foam in the mornings. Because anyone that knows Eloise knows how much she likes eating our coffee foam — even in the worst of times.

So we watched helplessly as it seemed our little girl was slipping away both in personality and in weight. We began to talk more seriously about the feeding tube, but it was so hard to know if the situation was temporary or permanent. Was her low appetite and sleepiness just short term side effects from new meds that would wear off in a few weeks’ time? Or were they the longterm price that we’d have to pay for seizure control? To make matters worse, we began weaning her from Keppra and discovered that withdrawal side effects were also low appetite and sleepiness. It was hard to know if or when there would ever be light at the end of the tunnel.

But here I am writing an update. Because, finally, after months of chaos and not so pleasant surprises, I think — I hope — we’re reaching the end of that tunnel.

Magic weight gain plan

Over the past few years, I’ve spoken with many many parents whose kids currently or formerly had feeding tubes. And all but one speak of their child’s feeding tubes in glowing terms. “It was a gamechanger for us.” “I didn’t want it at first but it has been a Godsend.” “Oh the peace of mind to know our kid is finally getting enough to eat and is growing.” “He eats by mouth for fun and then we get in any extra nutrition he needs through the tube.” “I feel so much peace of mind knowing my kid is getting her medicines now.” “It’s really easy actually.”

Multiple times in our journey, doctors have casually suggested a feeding tube for Eloise. And, so far, we’ve been fairly resistant. I’ve spent some time processing why, but the short version is — Eloise, at best, will have the gross motor and mental skills of a 12 month old when she’s an adult. That means every skill she develops is one she’s fought for, and one that we don’t take for granted.

Right now, she can eat by mouth safely and, by golly, we’ve decided for the moment that if we can keep that going, then we’re going to.

So we’ve been thrilled these past few weeks to have figured out a way to squeeze Eloise’s entire daily caloric needs into just 2 bottles per day. Which means that as long as we can get her to drink those, then anything else she eats or drinks in the day is just bonus calories.

Now that she’s eating and drinking again, getting those bottles in her has been a breeze for the past few weeks. So in that time she gained back everything she lost and then gained even more. She’s shot from the 3rd to the 8th percentile in just two weeks. It’s not a feeding tube, but it sure does give me peace of mind at the moment knowing she can continue to eat orally AND we can get enough calories in her every day without pushing.

Curious what our plan is? We give her one bottle of 300 calorie Nutrica’s Nutridrink, and to her bottle of breastmilk and Jimmy Joy we add a bunch of scoops of Nutrica’s Super Soluable Duocal — a calorie dense powder that doesn’t change the taste or texture.

Development gains

Back at the end of July when Eloise hit 18 months, I made a video to celebrate her 1.5 year old achievements. I wanted to record where she was developmentally.

But she has continued to develop, which makes my heart so proud.

• Eye contact: Eloise has never really made eye contact, unless you count her looking at our phones when we record her. She has something called CVI (Cortical Visual Impairment) — you can see a video here of what the world looks like to someone with CVI. It means everything is okay physically with her eyes, but her brain struggles to process the visual information. It started to improve some in the spring, but we knew that looking at faces and making eye contact would be one of the last of the things to improve, if it ever did. However, these past few weeks, Eloise has begun to frequently search our faces and make very short eye contact. It’s a start!
• Rolling: She can now pretty easily roll from back to tummy and tummy to back if she wants. She kept getting stuck on her belly before but not anymore!
• Sitting unassisted: In September she began surprising us by being able to sit on her own for a few minutes at a time. We thought it might be due to the Prozac — which she was on a low dose of. But she was later removed from it (they were afraid it might have been causing seizures.) And, just a few weeks ago, she sat unassisted for 25 minutes before I finally picked her up. Now, though she can sit well, we’ve seen she really has to be motivated because sometimes we put her down and she throws herself backwards in 20 seconds. And, other times, she has no problem sitting unaided for long periods. I do look forward to the day we don’t have to make sure there are soft surfaces around her, just in case she decides she doesn’t feel like sitting.

One of Eloise’s physiotherapists used to work for some time in an intensive rehab center for kids that often had neurological disorders. She said that, in general, if kids are able to sit unassisted by the age of 2, then almost all of them go on to be able to walk eventually. Which means, if we’re lucky, Eloise may be able to walk someday. For kids like her, if they do walk, it’s usually by age 7 or 8 at the latest.

However, she’s had a few regressions. Or, well, maybe pauses. Her standing has regressed a bit — which started even before her seizure storm. Currently, she’s almost entirely uninterested in standing. And, when she does, she usually bends her knees. The only progress here is that somehow, after our hospital trip, she does not seem nearly as bothered by physiotherapy or her stander. So we can actually leave her in her stander for an hour or more — she just sleeps. She also is not nearly as interested in trying to feed herself, although she’s showing signs that is returning, too.

Currently, Eloise still has physiotheraphy three times a week and we’re now really working on her hands and arms. She doesn’t like to stretch them out and she usually refuses to put any weight on them. So that’s our next goal — getting her to start bearing weight on her arms. It might take a long, long while.

Figuring out our priorities for her

I had a lot of time to think while I was in the hospital with Eloise. For over a week basically all I could do was keep constant vigilance, staring and listening for any indication a seizure was starting. When one began, I pulled out the hospital clipboard and recorded all the details. Toward the end of that first week, every 7 minutes she was having a 2 minute seizure. So, with only tiny spurts of of 5 minutes of downtime, I couldn’t do much more than think on how we’d make the best decisions for Eloise.

Priority 1: Keep Eloise alive

Keeping her alive at the moment means making sure she gets enough calories and controlling her seizures. Because any seizure has the potential to turn into one that threatens her life. So if we can minimize the amount of seizures Eloise has, we can also reduces the risk of her dying. So keeping Eloise healthy and away from viruses (which trigger epileptic episodes) is another way we help control her seizures apart from just using medications.

Priority 2: Keep the skills Eloise already has

Keeping the skills Eloise already has is harder than you might think. We already saw in the hospital that when we gave Eloise a calorie rich drink a few times a day, she lost her motivation to eat solids. And within less than 2 weeks she was then struggling to chew harder food textures. So she can lose skills fast.

Priority 3: Develop more skills

For most neurotypical kids to develop new skills, all they need to do is play. For Eloise, however, it’s different. It takes a lot of diligent, focused practice and therapies to learn new skills. So we currently have her in physiotherapy three times a week and occupational therapy once a week. We’re also slowly but surely making progress on Eloise’s water therapy room (or, well, our builder is who also has a fulltime job and has been slowed down a lot by winter and darkness).

But the greatest of these is joy

As we brought Eloise home from the hospital and saw her slipping away from us possibly from the anti-seizure medication side effects, we were reminded again that our highest priority for Eloise’s life — and our life as a family — is joy. So we knew that if the side effects endured much longer, we needed to have some serious conversations around possibly reducing her medication dosages to try to find a better balance for Eloise that, though it may involve more seizures, would possibly bring our little girl back.

Luckily, Eloise has been mostly herself for almost a week now, so we’re hoping we’re over the worst of the medication side effects and we won’t have to make any hard calls.

Because, ultimately, our goal is to enjoy each and every day we have with Eloise — because none of them are guaranteed. So we want to treat them as the gifts that they are.

Some big changes for Brian and I

Back in early September, we went on our first family vacation which, Brian and I agreed at the time, was very much needed.

Because we’d been back at work only 3 months for me and 2 months for Brian, and we were definitely overwhelmed. It was clear life wasn’t working for us. Our eating was erratic, our house was a disaster, we weren’t working out, we never had enough time for each other, we barely saw Eloise, and nothing seemed to be getting done. And we realized we were both far too stressed at our jobs for being back such a short time. Not to mention, moving into the Fall season meant a much higher risk of one of us carrying some sort of virus to Eloise, so we returned to fully remote work and masking up everywhere else. Which is why we decided something had to change — even before Eloise had two hospital emergency visits and then her storm of seizures began.

So, in typical Brian and Mallory fashion, we just opened our hearts to what life had to throw at us and, within a few weeks, fate helped us decide on some major adjustments.

Brian was headhunted by several companies on LinkedIn and, after a lengthy interview process, decided to join a promising local startup. Because, after we processed a lot on our vacation while Eloise slept away her fever, Brian realized a smaller place with fewer people and more early-stage problems to solve was what he wanted. However, the new job meant he’d have to go fulltime (he’d been working 3 days a week), but the pay would end up replacing both of our salaries. In order for me to stay at my job, we’d need to find an additional caregiver to watch Eloise, but by that time Eloise’s seizures and emergency hospital visits were stacking up. Which is why it became clear that, at this point, the right move for our mental health was me becoming Eloise’s fulltime caregiver and putting my work on pause for the moment. Thankfully, in Estonia you can be on parental leave from your job up to 3 years, but only the first 1.5 years of it are paid. So only a few months after returning to work, I went back home.

So that’s where we are at, now. We’re adjusting to Brian being at work fulltime and me being home fulltime.

I’ve always told people that, of the two of us, Brian is most definitely the better mom. But I’m a pretty okay Mom, too. And the reality is that Eloise is such a delight that she makes it easy. I’ve never seen myself as a stay-at-home parent, and, who knows, I may go crazy soon. But I went through some incredible therapy over the past few years that seems to have done me a lot of good — because, so far, I am filled with a peace and satisfaction that weren’t there before.

Regardless, we will see what happens as life unfolds. We aren’t planning too far ahead these days. One day at a time.

Finally, our journey to expand our family

If you follow us on Instagram, you may have already heard the news. But for those that just get facebook or blog updates, this part will likely come as a total surprise.

In August, Brian and I discovered on our 15th wedding anniversary that we were pregnant — naturally. In all our years of marriage that has never ever ever ever happened. Getting pregnant has been ridiculously tough for us. We started fertility treatments when I was 32, and I’m 38 now.

Sadly, though, a few weeks after that positive test, we lost the baby — we never even saw a heartbeat.

Much to our surprise, though, we got immediately pregnant on my next cycle.

This time, though, there were two sacks on the screen. Twins! But like all pregnancies for us, there seems to always be a tragedy — though one had a strong heartbeat, it was clear the other wasn’t going to make it. As weeks passed, Brian and I both struggled to attach. So when I went in for my 7 week checkup, I didn’t feel too surprised to learn that the heartbeat was gone. This pregnancy, too, had ended almost as soon as it had begun.

For our fertility journey, that made 6 failed embryo transfers, four pregnancies, five babies in heaven, and one perfectly imperfect Eloise with a lot of missing DNA.

Because I was in Tartu with Eloise when the second miscarriage was happening, our local community rose up and helped me get appointments with just the right doctors at just the right times. One was the best miscarriage doctor in Estonia who performed all sorts of blood tests on me to check if everything was all right. And the other was a geneticist who did genetic testing on the largest baby we lost.

And the answer surprised us.

Before, after all our losses, I had thought I had thought one of two things was going on.

1. Something was wrong with my body and it wasn’t able to hold onto pregnancies
2. We have mosaic gonalism and many or most of our embryos are carriers of Eloise’s genetic deletion and that’s why we lose the babies

For some reason, I had long ago given up on a third option — that maybe one or both of us has not so great eggs or sperm, and so we keep making babies with genetic issues that don’t make it. Because what are the chances we have that much wrong?

But the baby whose heartbeat we had seen and then lost so quickly? She had trisomy 13. She never would have made it to her first birthday even if she had been born. My body had naturally known what to do.

There has been, somehow, an enormous amount of peace that came with that answer.

While that might seem like a devastating thought — that most of our embryos are mortally flawed — it actually gives me comfort. Because it means my body has known what to do. And it means that, with enough tries, we might end up with a baby or two that has neurotypical DNA.

And that feels hopeful.

I mean, shoot, we got pregnant twice naturally on our own — once even with twins. So that feels worth of celebrating.

Okay. That’s enough for this update. But I thought it far past due.

All our love from this family that is feeling much, much more peace these days

Mallory, Eloise, and Brian

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