52 weeks: We ❤️ our virtual village (you)

I read something on an instagram post this week. The woman’s post said something like, “As a parent of a disabled child, I’m so sick of hearing, ‘Have you tried [insert unsolicited medical advice here]?'”

I paused, checked my own feelings, and realized I felt confused. Her emotions as a mom of a medically complex kid are, of course, absolutely valid. But the weird thing is that I feel exactly the opposite — at least at this stage in our journey.

You could say this statement is true of us, “As the parent of adorable Eloise — who is definitely very disabled — I am so thankful every time I hear, ‘Have you tried [insert unsolicited advice here]? It has saved us so much heartache and pain, and I think it will continue to. We wouldn’t have made it without our virtual village.”

So, dear readers. Please please continue giving us all your ideas and suggestions on any issue you see with Eloise — however simple or obvious the solution may seem to you. What’s the worst case scenario (with us, at least)? Your idea doesn’t work for us or we ignore it or we’ve already tried it. But what’s the best case scenario? You help us — and Eloise — a bunch.

So many many many many things we have learned and been able to help Eloise with so far have all come from suggestions from those who read this blog — many of whom began as total strangers to us.

So let me just say a huge thank you from the bottom of our hearts.

The week 52 highlights (according to instagram)

From the Eloise the Tiny Fighter Instagram stories this past week:

Seizures still here, still mild, but changing

Another week. And, as usual, with still a bunch of seizures.

When she started having seizures in November after her big ones, she always faced her right when she had them. Then she had the 16 days with no seizures. Then she started facing her left.

Well, she is still facing the left when she has them, but a few days ago her seizures seemed to change again. She seems far more “alert” when they are happening. She will kick her feet some and sometimes even eat a little food if you put a spoon to her mouth. She just looks almost spaced out, and a few of them she smiles through the entire episode.

Total of 21 seizures during this week (week 52).

• Friday: 2
• Saturday: 8
• Sunday: 3
• Monday: 1
• Tuesday: 1
• Wednesday: 3
• Thursday: 3

But, still, the seizures right now don’t seem to make her tired afterwards and she bounces back right afterwards, so we feel grateful. We do know with SCN1A related seizure disorders that they will likely change over time, so… what is true today may not be true tomorrow.

Increasing her same medication

The medication that hasn’t seemed to work? Well, the blood lab results came back last week and the levels in Eloise’s blood were below what they should be. So the doctor is increasing her dosage, again.

No new medicines. Just more of the old one — Keppra. I have mixed feelings. But maybe it is best not to change too much until we find a different doctor anyway.

I love our virtual community

I think almost every week I e-meet someone or have contact with someone I have already met virtually that gives us some huge encouragement.

Be it emotional encouragement. Treatment ideas we had never heard of. Research info that gives us something to ponder. Or ways to navigate the healthcare system. All of it is just invaluable.

Reapplying for a more severe disability

Eloise was awarded the most mild disability last year. It’s something, but not nearly enough. A more severe disability will give us access to a state-funded caregiver, psychologists services, and more financial help.

Thankfully a friend is helping us get this re-submitted soon.

Treatments for Dravet / SCN1A related seizure disorders

A new friend we have met recently has an aunt who works as a nurse specifically for Dravet patients in Colorado Children’s Hospital, where there is an entire centre dedicated to treating Dravet Syndrome humans. (And it is not the only comprehensive care centre for Dravet patients in the world — crazy!)

We were able to ask a bunch of questions through him and get a bunch of answers — some surprising, others not. But it gave us some leads of where we might go next.

In addition, a mom I’ve never met reached out on instagram. She also has a baby around Eloise’s age with Dravet and is going to ask some questions of ours to their team.

I just. I don’t even have words for how thankful I am.

Getting therapies for Eloise

A mom of a child with a genetic disorder here in Estonia found me somehow this week and reached out with information that surpassed even my wildest imagination of what was possible for treatment here.

She has started to explain to me what she has learned to get her own daughter help. And it means that, with a lot of effort and work and me calling places and applying for money and emails and time, that we may get to the point that we could have a therapist visit Eloise almost every day of the week — and it be funded by the government. Considering right now all Eloise gets is a physiotherapy home visit once every few weeks because the only one I knew of (who is amazing!) lives 2.5 hours away and that is as often as she can come — a therapy visit 5 days a week sounds like a miracle.

Not only that, but she said she wished she gave up on doctors in Tallinn sooner (she actually had the same one we currently have that we haven’t been happy with) and went to Tartu. They got assessed in Tartu and got a tremendous amount of emotional and mental support on top of practical ways to help their daughter. And now they are getting their therapies here in Tallinn. So it IS possible for us to do the same we hope.

I think we’re on the right track with Tartu

We have reached out a few more times to Tartu and though we have nothing confirmed yet on when or if they can see Eloise (this is the city 2.5 hours away that has the newly opened Rare Diseases Center), we have heard from 3 separate people this week suggesting the same neurologist that we already reached out to. Fingers crossed she will see Eloise and take us on as a case. 🤞🤞🤞

Her sitting is improving

She may hate tummy time still (there is no faster way to get her angry than to put her on her stomach), but she is at least tolerating sitting. Or, well, practicing sitting.

Call me crazy but I think she’s improving.

Celebrating Eloise’s birthday

Tomorrow, Saturday 29 January, is her first birthday. We thought about planning a celebration, but one of the principles Brian and I live by is balancing effort and pleasure. If it takes a lot of effort but we don’t get a lot of pleasure out of it, then we skip it. If it takes only a little bit of effort but we get a lot of pleasure out of it, then we go for it.

Planning a birthday party is too much effort. And, honestly, neither Brian nor I care about parties or birthday/holiday celebrations. So we decided to skip it.

Instead, we will do a short photoshoot with Eloise on her birthday. I asked for photographer recommendations (thank you for everyone who had a suggestion! so many incredible humans) and, in the end, a friend who used to do photography suggested a swap. She’ll take Eloise’s 1 year photos on her birthday and I will then take her daughter’s 1 year photos in a few months.

And if we decide we really want a big photo session with even more photos, we can hire a photographer for another date.

I felt satisfied with that.

To kick off her celebration, I even found a little cake Eloise could eat. It’s called banoffe — a banana custard cake that is just incredible. We gave some to Eloise today already and, unsurprisingly, she loved it.

Celebrating my own birthday

My birthday is actually the day after Eloise’s. I have a wise friend named Maarit who tends to ask the most profound and useful questions. She asked me what a perfect birthday would look like for me, and what she could do to help.

At first I laughed, “I don’t care about celebrating my birthday.”

Because, I don’t.

But the more I thought about it, the more I realized there were actually a few things I did want. Who knew?

It had two parts.

Part 1: Have friends help me complete a project that will bring me a lot of joy but I have not been able to complete on my own

So my friends Maarit and Gina came over this week to help me re-paint one of our kitchen walls that has been bugging me for over a year. And I LOVE the result. I never would have gotten it done on my own. Every time I look at the wall now, I feel grateful for their time — what an incredible, incredible gift.

Part 2: Spend time by myself in a cabin in the woods

I took the money that Brian’s parents and my parents gave me for my birthday and rented an AirBnb for two nights. So on my birthday on Sunday, I’ll head out to a tiny studio home near the sea in the middle of the woods. Tuesday morning, I’ll come home.

That will be 1.5 days all by myself. Though I love them dearly, I think it will be good for my soul to be away from Brian and Eloise and everyone else for a short bit. No obligations but pumping. I am pretty sure I will do a lot of reading, tea drinking, and who knows — maybe a bit of writing. (If it wasn’t too much of a pain and I had longer time, I’d probably even do some painting.)

Regardless, I cannot wait.

Feeling cheerful and grateful and ready for some rest, too,

Mallory, Eloise, and Brian

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