It’s funny, you could probably measure how well Eloise is doing by how serious the things are that we’re currently “worrying” about. Because, like all parents, worrying is just something that comes naturally as breathing. Even if one worry goes away, another will almost immediately takes its place. It’s like the brains of all parents think that “Normal” and “Worry” are the same things.
I have no idea what it’s like to be a parent of a neurotypical kid. I would imagine, though, the stuff I might worry about at the age of 11 months of my first kid are things like what type of toothpaste to give Eloise (and how much she’s swallowing), when to start potty training her (and whether I’m a bad mom for using any sort of paper diapers), how much I should spend outside with her (and whether our stroller is the right fit for her), whether I’m giving her too many pre-prepared foods (rather than serving her up fresh food at every meal), whether her toys are stimulating enough (and whether she has enough variety to not get bored), what to do for her first birthday party (and what kind of theme to have), and whether she’s ahead or behind her peers in milestones.
Gosh, even as I type that list, I feel a little jealous that people get to worry about stuff like that. But I also feel a little of relief — we’ve definitely learned we have to prioritize our worrying. We cannot freak out over things that likely won’t seriously affect her current or future development because, well, we have plenty of those things.
We’ve had feeding issues, growth issues, reflux issues, pain issues, food intolerance issues, mental development delays, gross motor delays, and, of course, seizures.
Today, as I write at noon here on Monday, Eloise has already had two seizures.
But.
They are the first seizures she’s had since December 24. A whole 16 days with no seizures.
Brian and I both remarked just yesterday that we were getting a little too used to it. (Since her seizures are almost certainly related to the fact that she seems to be missing 80% of one of her copies of a gene called SCN1A. And when a kid has seizures before the age of 1 and also has mutations or deletions of this gene, then they are almost always diagnosed as having something called Dravet Syndrome. The syndrome is one of only two I’ve come across so far that have seizures that are lifelong and treatment-resistant. Which means fighting her seizures is almost definitely going to be a lifelong battle. And it also means her chances of death go up, too. As many as 1 in 5 of these kids don’t make it to the age of 16.)
But having those 16 days gave us space to start thinking about our own issues. And dreaming about our goals for Eloise.
Focusing on our own problems
Brian noticed about a month ago that he has a heart arrythmia for about a month. He’s done the standard googling on what to do to help it but had no luck fixing it himself. Since Eloise had been on a break from seizures, he finally had the mental capacity to make himself a doctor’s appointment this past week and — surprise surprise — the doctor said his problems were likely due to stress.
So we started brainstorming two things:
- How we could reduce his stress a little faster
- The root of what’s causing the stress
To reduce Brian’s stress, he and I both agreed that maybe he should just take a few days off by himself. Thankfully, after a quick facebook post asking for help, a few folks offered their homes in nature they aren’t currently using. Which means we just have to work out the logistics (like, hopefully, some friends coming and helping me a little with household stuff and Eloise) to make it happen.
But the root cause is much more interesting.
Brian feels stressed, in part, because he feels like we don’t have an overarching, guiding plan in relation to Eloise. What is the principle that governs all our decisions? Why are we pumping to give her breastmilk even though it’s a pain? Yet not (really) considering moving to another city or country where Eloise might possibly receive better care? Why bring ourselves discomfort in one area but not another?
Those are good questions, but they are hard ones.
Dreaming about our goals for Eloise
The hard reality is we don’t know what Eloise’s future will bring. With the arrival of seizures and the problem of Dravet Syndrome, there is a higher likelihood that Eloise will be at the more severe end of her deletion. Since we don’t know what will happen, it makes setting any sorts of goals quite difficult since we don’t know if she’ll be on the higher or lower end of functioning for her deletion — and that makes a pretty big difference.
If she’s on the lower functioning end, that means in addition to being non-verbal and having profound learning disabilities that kids even at the higher functioning end of her deletion have, she will be wheelchair-bound, almost undoubtedly eventually need a feeding tube, and will spend much of her days asleep or in another world.
But we decided to start dreaming a little anyway. In hopes that, maybe, just maybe, she’ll be on the higher end of functioning.
Brian asked me what my goals for her would be in the best case scenario for her deletion. So I quickly came up with some basic ones off the top of my head based on what I know COULD be possible.
- Mobility goals: My hope is that Eloise will walk by the age of 7
- Communication goals: At its most basic, I’d love to find a way for Eloise to communicate “yes” and “no” with some sort of device (because it is unlikely she will be able to say any words at all). But beyond that, I’d love for her to be able to communicate what she wants. But my highest hope would be that she could communicate her feelings some day.
- Feeding goals: I know she will likely never eat normally, but I’d love for her to be able to feed herself some day.
- Toilet goals: At bare minimum, I hope that as an adult, Eloise will only poo on the toilet (having her pee her in diaper isn’t as big of a deal). But it would be incredible if we could somehow get her to only do those things on a toilet.
- Sleep goals: I know sleep is a problem for many kids like Eloise. So all I know is we should try to set her up for good sleep now and hope that it makes a difference down the road.
Are these good goals? Are these the right goals? Are these achieveable goals? Are we on track to hit them or do we need to do something different?
All questions we need to think about.
Brian’s hope, especially, is that he’ll take some time away very soon and think through all that and more. And, hopefully, as he settles on guiding principles to live by, that that can reduce some of his stress.
Eloise is continuing to develop
Maybe it’s been the break in seizures that has helped her little brain, but it’s felt like I’ve watched her develop quite a bit these last few weeks.
Her sitting seems to be getting a lot better
She seems to actually have the strength to sit, and has for some months now. The problem is she often throws herself backwards or just doesn’t pay attention to balance.
She’s grasping things a lot more
For weeks now she has seemed to do a lot better grasping at objects, but it has been hard to tell whether it was on purpose or an accident.
Now, actually the last few days she’s grabbed the spoon while I was feeding her and held it in her mouth. So it seems to be something she’s doing on purpose. And something she understands.
She’s understanding she can influence her environment
Eloise has been “playing” a keyboard for a few months now. But I have never been sure it wasn’t just her flapping her arms up and down as usual and then us assuming that meant she was doing stuff on purpose.
But what happened yesterday was unmistakeable.
Watch.
I think I almost cried when I saw this. It’s so hard to tell how much this little girl understands about the world around her, but the fact that she noticed that she could make a difference by deliberately hitting the keyboard?
This gives me so much hope.
Although tummy time and rolling are “no”s from her right now
Something that is so important for all babies, but especially her, is that she really needs to be rolling and on her tummy. A lot.
I wrote before that she hasn’t really rolled since she had her big seizures at the beginning of November — whereas she used to do it all the time.
And she likes tummy time even less these days than she did before.
The part that worries us a bit is if she isn’t spending time on her tummy, specifically strengthening those back and neck muscles, it’s going to be a very very very very very long time before she can do anything that looks partly like crawling.
Our week
In the meantime, tomorrow Brian and Eloise will go back to the Children’s hospital for a day visit with the neurologist. The plan is that, a few days later, we will likely have another EEG for Eloise to see if her medicine, Keppra, is helping. We’ll find out tomorrow whether the EEG will be this week or next. If the EEG won’t be until next week, then we are still hoping Brian can take a few days off in the countryside on Wednesday through Friday.
Otherwise, life here has been happily uneventful. Finally, after 1 month, her vomiting has finally stopped. Although she has started struggling to eat as much, so something is still bothering her. But, other than that, Brian is still the main caregiver while I have been working hard to sell or get rid of a bunch of stuff we really don’t need to keep to help declutter our lives and reduce our stress levels.
Likely, despite the fact that we put together guidelines of how and when we can see people, if she’s already had 2 seizures in one day, then it probably means she has some sort of illness again. Or maybe she’s just teething.
Regardless, both Brian and I are just hoping that her seizures don’t come back as bad as they were in December. It was so nice to have a long 16 day rest from them. But the fact that she’s fallen asleep after both of her seizures this morning makes me guess that we are probably in for another long run of lots of seizures again.
Sigh.
And if that happens, well, then probably our dreams and goals for her and us will get put on hold again. And we’ll go back to just trying to survive.
But let’s see. If anyone can figure out how to be so stubborn that we figure out how to thrive, not just survive, in the midst of trauma, I hope it’s us.
Wish us luck.
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 