For reasons beyond my understanding, it seems Eloise has a small but dedicated following that enjoy reading about what’s gone on in her world each week.
This page is for you — all the weekly, biweekly, or monthly updates on Eloise.
22 months: Putting ourselves back together again
16 months: Renovations, toys, and equipment
These last few weeks, something magic seems to be happening. It’s like Eloise has suddenly realized there is a world beyond her and she wants to explore it. She’s reaching for things, transferring objects from one hand to another, exploring textures and lights and environments. With our help, of course. Read the full post — 15.5 months: Eloise the Explorer
Back in December, when seizures were still new to us, I remember a phone call I had with our doctor in Tallinn at the time. “How’s Eloise’s seizures?” “Well, she’s having anywhere between 5-8 per day.” “Okay. Well, contact me if it gets worse.” I remember feeling stunned. But, Tartu? “I want you to contact me every time Eloise has a seizure.” “Wait. Every time? I’ll be writing you a lot.” “Yes, every time. I don’t mind.” And that interaction basically sums up how different the care feels in Tartu versus Tallinn. Read the full post: 15 months: Digging roads for Eloise
Almost exactly one year ago, on Good Friday, I finally announced Eloise’s birth to the world. It was a teary letter. It seems fitting to re-visit that post a year later because, though we’re in a quite different place now than we were then, it is still so prophetic in many ways. Read the full post: 14.5 months: One year after Eloise’s Good Friday birth announcement
I feel like this video sums up the spirit of Eloise’s week well. Eat food? Nope. 🤔 Eat bath book? YES!!!! 😃 Sigh. Teething babies.🤷🏾♀️ Read the full post: 61 weeks: What’s the point of eating?
It’s so easy for the current reality of Ukraine’s destruction to quickly fade from thoughts. The world moves on. And though we are determined to be as present and as joy-filled as we can for this precious girl of ours, lives are still being lost every day in Ukraine. So we still look for ways… Read the full post: 60 weeks: De-cluttering more than stuff
Russia (okay, well, Putin) still bombards Ukraine every day. And we still have a kiddo who needs our full attention. So we move on with life — with teething, with trying to get her to nap, with doing everything in our power to make sure she’s growing and developing. We’re privileged to be in a place right now that we can do that, so we will. Because life will not always be this peace-filled for us. In the meantime, we’ll just hope that the Estonian military experts are correct — that Russia isn’t strong enough to take Kyiv. Read the full post: 59 weeks: Rested, teething, but happier
All over the Western world we’re experiencing a bit of collective grief. It’s sad and weird and all kinds of things living in the middle of a country being invaded to the south of us. But life must go on. And, it feels weird to say it, but this week has been a breath of fresh air for us — when it comes to Eloise. Read the full post: 58 weeks: Finally some relief
This has been one heckuva week for all 3 of us. Apparently the stress of feeling like we’re constantly fighting — to get Eloise to eat, to get Eloise to nap, to get Eloise’s pain under control — has been taking a toll on us. Add on the fact that her seizures returned for 24 hours and for a minute there we were convinced we were gonna go back to the hospital and. Yeah. It’s not been our best moments. Read the full post: 57 weeks: Not our best moments
This kid takes forever to grow a new tooth — does anyone else have a kid who takes a month to grow one? But when we got such incredibly great news this week, it’s hard to really complain. Read the full post: 56 weeks: Teething, miracles, and waiting
Between Eloise’s tooth still coming in and her practicing all kinds of new skills, we have been so encouraged this week. Yet like most parents, we’ve still been pretty worn out by all of her crying and not sleeping. Thankfully, though, her fussy period shouldn’t last much longer. At least we hope. Read the full post: 55 weeks: 17 days seizure-free
1 new tooth, 1 stuffy nose, 1 pair of shoes, 1 scheduled hospital visit, 1 struggling-to-nap baby, 8 appointments, and 10 days of no seizures = a set of exhausted yet hopeful parents. Read the full blog: 54 weeks: Exhausted yet hopeful
Overall, really, this has just been a fantastic week. We don’t get to say that often, so I’ll savor this time while it lasts. Read the full post: 53 weeks: Therapy reset
Unlike probably many parents in similar positions, 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.” At least at this stage in Eloise’s life. 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. Read the full post: 52 weeks: We love our virtual village (you)
I feel so much lighter than last week — for so many reasons. Even though we had a short setback, we really had a lot to be encouraged about. Read the full post: 51 weeks: Feeling more hope
We always expected that Eloise’s 16 day seizure-free streak was only temporary. What we did not expect, however, is that her seizures would come back and almost immediately send us back to the hospital. All seizures suck. But SCN1A-related seizures are especially brutal. Read the full post: 50 weeks: Hospitalized. Again.
With a 16-day pause from seizures (although today they came back), it gave Brian and I some time to start thinking about our own needs, planning for her future, and enjoying the fact that she is still developing. Read the full post: 49 weeks: Setting dreams and goals
Eloise is 11 months old, wow! Looking back, wow we have so much more capacity this week than we did a month ago. I think there are quite a few things contributing. Read the full post: 48 weeks: 10 days of no seizures!
Even though I feel hesitant to write it out in case I jinx it, I can’t help but celebrate. Y’all, 4 out of 7 days this week were seizure-free. Hip, hip hooray! That has felt so hopeful. But I feel way more hope this week, especially around seizures. Read the full post: 47 weeks: Some seizure hope
You know, living with her seizures do suck, but we are determined not to let them steal our joy. This little munchkin is still adorable and incredible. So it’s time for an actual update, even if it is two weeks rolled into one. Because I want to celebrate the great stuff that’s been happening, too. Read the full post: 45-46 weeks: Still much to celebrate
At times, I swear our life is a soap opera. It’s like a strange telenovela written in a mold-infested basement by an author who lives off caffeine and cigarettes. So many unexpected twists and turns — not all of them pleasant. Read the full post: 44 weeks: The seizure marathon
It’s been nearly a month now since that Saturday we rushed to the hospital with Eloise. You’d think we would be back in the swing of regular life by now but, strangely, we aren’t. It almost feels like Brian and I are starting over from scratch. Read the full post: 43 Weeks: Her tooth is here
To say we’ve had a few rough patches over the last weeks may be an understatement. In case you missed recent events I posted about on Eloise’s facebook group and the stories of Eloise’s instagram page, I’ll recap it. And then move on to those treasures I mentioned. The very short version On Saturday, November… Read the full post: 40-42 weeks: Treasures from trials
I’ve been kinda freaking out. In the best way possible.
I was fully preparing myself for a lifetime of Eloise struggling with food intolerances. Not only that, I was mentally making peace with the fact that not only would I also have to stay on a limited diet for quite some time as I continued to pump breastmilk so she could have something safe to eat, but that my own body might never be able to handle milk nor wheat again as my gut adapted to life without.
But it looks like, thankfully, I was wrong. Oh so wrong. Read the full post here: 39 Weeks: Maybe solids were magic
Brian here.
I don’t often write blogs, partially because I’m so impressed with Mallory’s ability to communicate through them, and partially because I never really feel like what I have to say would be meaningful or useful to anyone.
But I thought hey, I could give Mallory a bit of break so she could spend her ‘free day’ doing something really restful (we pick a few days a week and allocate one of us as the primary carer for Eloise, so the other can get a dopamine hit by getting stuff done around the house). Read the rest: 38 Weeks: Mushed Banana Giggles
At times, it feels like the “problems” never stop. We solve one problem, then another pops up that’s just as big. Or bigger.
I guess that’s life with Eloise. No rest.
Sigh.
Brian and I keep remarking, “Darn it. For like 3 weeks there she was actually eating almost like a normal baby. Eating quickly. Eating nearly enough. We had extra time in between her naps to hang out, play with her, read, maybe even go on short walks. But now we’re back to the feeding difficulties dance where getting food in her takes almost the entire time she’s awake. Dag nabbit.”
Which means going places with Eloise is almost out of the question again unless it’s a necessity. Because we can no longer count on me feeding her in the car while Brian drives — ’cause solids is pretty much the only thing she’ll eat. Read the rest: 37 Weeks: Still holding on
It’s weeks like these that I am so enormously grateful that Brian is staying at home, too. Just last night as I was going to bed I looked over at him. “Brian, you staying at home with us has been a great decision.”
“I completely agree. It was the right move.” Brian responded.
“Can you imagine what it would be like if you were still working?”
“It would be rough.”
“I would not be okay mentally. I really wouldn’t. The amazing thing is that right now even in the midst of tough stuff, I actually feel like myself. I’m so grateful.” Read the rest: 36 Weeks: Trying to wait it out
Much of this week, a dark cloud of concern hung over Brian and I as worst case scenarios began to play out in our minds.
In fact, it’s been a few months since we worried like we worried this week. (You might have already read some of it in my post about control being an illusion I put up a few days ago.)
But as I sit here on Sunday, reflecting over our week, I realize a lot of really great things happened I didn’t even notice because I was so focused on the parts that weren’t going well. So many bonus discoveries, even in the midst of the hard stuff. Read the rest: 35 Weeks: This was a rough one
One thing that’s now become pretty clear is that being tired (due to her low muscle tone) is at the core of why she can’t develop or do more.
Not eating enough? It’s because she gets too tired eating.
Not developing enough physically? It’s because she doesn’t have the energy to practice more.
Not sleeping longer than 33 minutes during the day? It’s because she’s so tired her body is flooded with stress hormones which won’t let her sleep.
And then the vicious cycle continues.
So if we could just get her more rest then she’d improve in all three areas, right?
Sigh. I wish. Read the full post: 34 Weeks: The big solution
Gosh this has been a week of extremes for us. Some massive victories and some frustrating setbacks. Read the post: 33 Weeks: A real life telenovela
Gosh this has been a great week. A really really great week.
Was it me not eating potatoes? Was it me not eating my favorite red lentil pasta? Was her better moods just a complete coincidence that I cut these two foods out? I have no idea.
Regardless, it’s been pretty great for her. Almost no pain, almost no reflux, and, increasingly, almost no spitting up. Read the full post: 32 Weeks: New (good) problems
As soon as I think, “Ah ha! We’ve had 2 good days with no bad poos and not too fussy, so we must finally be back at baseline. Great, we can start trialing a new food tomorrow!” Then, inevitably, she’ll have a pretty bad day or a really bad poo. And we’re back to waiting for a few good days in a row.
So, maddeningly, after her failing kefir at week 29, she still isn’t back at baseline. (Baseline is the place where her reflux symptoms are mostly gone — well, at least the big reflux pain flare episodes that last 30+ minutes — and her poos are the right everything.) Read the full post here: 31 weeks: Where has baseline gone?
Eloise turned 7 months old yesterday.
Sadly, though, this past week has been a rougher one for her. We seemed to have moved backwards a little on the pain front.
The good news, though, is that we moved forwards in a few other pretty great areas. Read the post here: 30 Weeks: A few steps forward, a few steps back
This last week, Brian and I just kept locking eyes, laughing and saying, “She is doing SO great!” Gosh it’s been good for our souls.
- I haven’t been worrying if any of the food I’m eating is hurting her.
- I haven’t been worrying if she has a single bad feeding.
- I haven’t been worrying if she has one poor eating day.
- I haven’t been worrying if she is losing (or gaining enough) weight.
- I haven’t been worrying if she’ll have a severely limited diet for the rest of her life.
- I haven’t been worrying if we’re doomed to stay on our couch for the rest of our lives feeding her.
- I haven’t even been worrying if she will eventually be potty trained.
Why?
Because things are looking really really optimistic. So many reasons. Read the post here: 29 Weeks: The miracle train keeps on chugging
One major reason I write — and include way too many details — is to crowdsource help. We need a village, which means you!
Whether you’re young or old, whether you’ve got a special needs kid or not, whether you’ve ever birthed a kid and raised one or not, you can help us. Read the full post: 28 Weeks: It’s a miracle
This week has been an odd one. So many highs but also so many strange not-quite-lows. It was almost like a roller coaster of “OH MY GOSH THIS IS SO EXCITING!” to “Man this sucks — I hope this is just temporary.”
Read the full post: 27 Weeks: What a weird time
A week after we got Eloise’s diagnosis, a wise fellow named Jeff sent Brian and I a podcast suggestion: Awesomeology (GRATITUDE) with Neil Pasricha. (Yes, for all of my [Transfer]Wise colleagues, THAT Jeff.)
I was still in shock and in a deep, dark hole of grief when he sent us that fateful message. But, at one of my middle of the night pumping sessions while Eloise was asleep and I was making my banana, coconut milk oatmeal for breakfast (back when I ate stuff like that), I listened to the episode. I can’t remember even half of what was in there but what did stand out was a practice the guy had. Every night, around the dinner table, everyone in his family would say one rose, one thorn, and one blossom.
- Rose = Something great that happened
- Thorn = Something not great that happened
- Blossom = Something that has the potential to be great that happened
The guy speaking said that by sharing these 3 things every day in his family, it brought them closer together.
Ever since then, multiple times a week, I do this same practice with my dear friend Gina here in Estonia. We record voice messages on Whatsapp where she and I share our “rose, thorn, and blossom.” She’s German, so she generally shares exactly one example of each — because she has a compulsion to follow exactly what the directions say. Since I’m American, I often share more like 10 roses, 1/2 thorn, and a few blossoms — because I cannot help but find the bright side (most of the time).
So I thought today I’d try that format. Read the full post here: 26 Weeks: So many Roses
I keep waiting for the hammer to drop. For something major to go wrong because it seems it has every other week. But… is it possible we might be in for some slightly less stress? At least for at least a bit?
Especially with a lot of stuff we want to accomplish on her behalf, we could really use it.
Here’s this week’s update about not feeling like a caged bird, a few of the many dilemmas we go through every day where there is no playbook (that I know of), and what a day in the life of caring for Eloise looks like. Read the rest: 25 Weeks: A day in the life of juggling too much stuff
This week we actually have a decent bit to celebrate without even trying to stretch to find the positive. Read the rest here: 24 Weeks: Cautiously optimistic on the food front
Last week at this time I was already writing this post in my imagination. It was full of great triumphs and victories. “We finally found our safe foods! I can’t remember a week with so few flare episodes since we left the hospital. Wow we’re so grateful. We’ve got this. :high five:”
But, friends, sadly, this is not that post.
These last few days have been pretty tough for her, but I’ll start with the better parts. Because there were plenty. Read the rest: 23 Weeks: Celebrations and Food drama
For now, weekly updates from weeks 5-22 are buried in our facebook page, where I’ve been writing since the week Eloise was born. We hope someday to transfer them all here. Until then, we have weeks 1-5 and her diagnosis day.
Picture of a freshly-showered, hope-filled Mallory from earlier today. And a cute baby Eloise who had a wonderful, fairly calm and happy morning. Because we had no idea what was to come. Maybe we were in denial, but we never expected this. Read the full post: Diagnosis day
No wonder I’d been feeling hopeless. “If only I didn’t have to pump, everything would be okay.” I added it all up. Between prep, pumping, labeling, and cleanup it’s been taking 65-70 hours a week for me (and Brian when he’s awake to help clean up) to pump. That’s like working more than a fulltime job. And, until now, I still haven’t figured out how to effectively feed her at the same time as I pump, which means time pumping = time separated from her. Read the full post here: Week 5: Pumping is not for the weak
There might be TMI in here for those of you who have never breastfed. So I will label the sections so you can blush and skip that one. Read the full post here: Week 4/Month 1: Pumping
It has been a whirlwind since Eloise finally arrived home. There is so much to update on. Learning how to make life work between Brian and I with almost no sleep. A fussy hungry baby. Our first visit to the specialist doctor. Pumping pumping pumping. And so much more. Read the full post here: Week 3: Our first week all together
It’s Friday, February 5th. And it looks like no one will be coming home today. Read the full blog post: Week 2: Hospital to home
Eloise was a name we chose while we w ere pregnant. It can mean either healthy or fighter/warrior. Since we’ve had so many scares, it seemed a fitting name — a declaration that she would be healthy, and that whatever trials came her way, she’d fight her way out of them. We had no idea how much we’d need that name. Read the full blog post: Week 1: We had a baby! We’re in the NICU.
Eloise The Tiny Fighter 