Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
This kid works so hard. It melts your heart. To help practice biting and chewing, we’ve started giving her a freshly baked cheese roll or cinnamon roll a few times a day. (God bless pre-frozen pastries and our air fryer that cooks them in minutes. 😍) These days she’s still refusing most food with her... Continue Reading →
I don’t know what it’s like to raise a “normal” kid but, gosh, sometimes it seems like something should be so simple but it’s really really not. In Estonia, the symbol of motherhood is a stroller (preferably a good stroller of the right brand or color) you use every single day — rain or shine... Continue Reading →
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.
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.
Sometime during my years growing from a child into an adult, I internalized the idea that I was never doing enough. Besides that -- I decided back then -- whatever I did do was never good enough. If I had a school project, it couldn't just be "good enough," it needed to be over-the-top amazing.... Continue Reading →
I feel like this video sums up the spirit of Eloise's week well. Eat food? Nope. 🤔 Eat bath book? YES!!!! 😃 Sigh. Teething babies.🤷🏾♀️
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... Continue Reading →
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.
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.
It had been a tough few weeks and Eloise was finally napping, so Brian and I were scurrying around the house to do a quick cleanup. As I was loading the dishwasher, Brian paused what he was doing, looked at me, and casually threw out a question. "What is our own trigger point? When would we consider fleeing Estonia if Russia invaded?"
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.
Life with Eloise is an absolute and utter joy. Until it isn't. We will find a way to take care of this kid and take care of ourselves and take care of our relationship. And we won't accept a life of merely existing in pain as an option. We will thrive while we do it. We're not there yet, but we've made a lot of progress. This is that progress. Part 2 of "Time to re-learn Teamwork".
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.
We returned last night from our planned Tartu inpatient hospital stay. So. 👏 Much. 👏 Good. 👏 News. 👏 There's no way to easily explain it all in an instagram story or a tiny facebook post, so blogpost here we go!
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. 🤞🏾🤞🏾🤞🏾
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.
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.
I've meant to write this up for awhile, because friends, family members, therapists, social workers, and medical professionals all ask the same thing when they first find out something is wrong. "What syndrome does Eloise have?"
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.
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.
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.
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.
If you're new to our blog, in addition to a bunch of other issues related to her chromosome deletion, Eloise started having regular seizures right after she turned 9 months old. As best as we can tell, not only will it (likely) be hard to control her seizures, but we are going to need to do far more than just keep trying various medications on her. So that's why Brian and I sat down this week to come up with this: Operation Keep Eloise (well).
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.
I can’t remember the last time I made a New Year’s resolution. And I never really understood that trend to pick a “word” for the next year. Yet here we are. With a word to help guide our lives in 2022. But it means way more than I’d ever imagined. And I think it has the potential to change our lives.
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.
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.
I told Brian, "I think every seizure she has during a day diminishes my emotional/mental capacity by 5-10%." So, on some days like yesterday, when she had only one, I felt pretty okay. But on days like Friday, when she had 7, I felt pretty drained by the end of the day.
I was going to write our 45 weeks update but this became something else. Back when Brian and I got married 14 years ago (yes, we're old) we had this thing. If there was a chore neither of us wanted to do, then we did it together. Dishes? Together. Laundry in the dark smelly basement?... Continue Reading →
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.
Eloise The Tiny Fighter 