July was our first month where both Brian and I were back at work. It was also a big month for so many other reasons.
It was
- the month we took our first big family trip (a work-cation to the southern Estonian city of Tartu)
- the month Eloise developed some strange movements that took us to the hospital (we still haven’t solved that mystery, but luckily they’ve almost disappeared now and doctors confirmed they weren’t seizure activity)
- the month random sleep issues arrived
- the month Eloise had 2 seizures (one was because we forgot her medication the night we returned from the hospital, the other we don’t know why — but still far better than when she was 10 months old and having sometimes 8 per day)
- the month we started trialing her on a med that may dramatically help her gross motor development… in 6-12 weeks
- the month we decided to start looking for a puppy (we may be getting a standard male poodle puppy next month, let’s see 🤞)
- and, of course, the month Eloise turned 1.5 years old
I’ll be honest, it’s been a bit of a ride. Brian and I are still figuring out how to make our lives work with a lot less time at our disposal. I haven’t figured out a good rhythm to read and respond to messages, emails, and comments from people. And Brian and I both are working on figuring out how to take care of ourselves, be present at work, be present with Eloise, and still get some things ticked off our to-do lists on occasion. But it feels do-able. We just have to find our groove.
But one thing I did want to record. We’ve been talking to Eloise’s doctors for months about a condition called slow channel myasthenia that a few other kids like Eloise have been diagnosed with and successfully treated for. There’s a decent chance Eloise could have it. She has some — but not all — of the symptoms and when they tested her, the results showed she definitely has some neurological muscle issues, but because she’s so tiny they couldn’t tell if it is myasthenia or not.
So we had a few options. Wait for months to try (likely unsuccessfully) to test Eloise again. Figure out how to get funded and get on a list to get tested in Finland. Get her on the drug (which takes 4-6 weeks to work) and see if there’s any positive change. Or do nothing.
If Eloise does have the condition (and the dosage is high enough), incredibly it would mean Eloise will gain motor skills very rapidly in comparison to her current speed.
So, after months of back and forth, finally, her doctors agreed we would try her on a drug that does treat it — Prozac — to see if anything changes. On top of the fact that it will take 4-6 weeks to see any effects of the drug if it’s working, she’s so young there’s no dosage information out there for someone her size. So we wait another month, hope Eloise’s gross motor development improves noticeably and, If not, then we increase her dose, wait another 6 weeks, and pray.
I’m trying not to get my hopes up, but if she does have this condition , then this treatment will be a game changer for her development.
But enough with boring medical talk. I decided to learn how to make a legit video so I could put together all things Eloise for her 18 month birthday.
To celebrate her. And to, hopefully, be able to look back on it in the not so distant future and see how far she’s come.
Hugs and cheers,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 