Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
One of the things I was strangely looking forward to in parenthood was our future child stealing food off of my plate. Then when we got Eloise’s diagnosis and saw many kids on feeding tubes, we realized it might not ever happen. Then when we discovered Eloise had severe food intolerances at the beginning of... Continue Reading →
I had been pretty good about writing weekly updates about Eloise, then they became biweekly updates, then monthly updates. Then I went back to work and they disappeared altogether. But I hope to begin them again because it always helps me celebrate and savor all her gains. If you haven't been following, gosh it's been... Continue Reading →
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... Continue Reading →
I grew up with dogs, but always thought of myself as more of a cat person. Brian is more extreme. He’s told almost everyone we know for as long as I’ve known him that he doesn’t like dogs. Eloise, unlike her parents, doesn’t discriminate — she seems to like all furry animals.
While training to be a counselor, a friend once said he learned never to assume you know what emotion someone has about an event. "Maybe a woman just lost her long time husband and you think, 'Gosh, I'm sorry, that must have been tough.' But you never know. Maybe he was a violent alcoholic and so her reaction was actually, 'Thank God he's gone. I'm finally free!'" So when you watch this video of Eloise, do you feel pity? Excitement? Or maybe even anger and frustration?
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 →
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.🤷🏾♀️
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.
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.
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.
We’ve got a few new problems. But they are ones I’m glad to have.
I still cannot for the life of me imagine why anyone who doesn't have a newly diagnosed baby with some sort of chromosome abnormality would want to read these insanely boring weekly updates about our lives. I feel almost guilty writing it all up, but it's become a helpful exercise for me to reflect on what went well, and what we may need to focus on a bit more.
Eloise The Tiny Fighter 