Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 →
“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” - Brian
They sent us home from the hospital on Tuesday the 7th, a little over 2 weeks after we first arrived -- far earlier than I'd expected. I was hoping to write a post about how after speaking to a psychologist I now have a much better undrstanding of my feelings around the feeding tube. I was hoping to write a post about how it's now been nearly 3 weeks with no visible seizures. I was hoping to write a post about how glad I am that we're home. And all that is true.
I should be jumping for joy. I should be writing a post about how incredible this is after weeks of seizure after seizure after seizure -- because it is. It really does feel like a miracle. Eloise's doctor even shed a few tears when she found out. Because we were all shocked. That's what I want to want to write about. But I'm not. (Okay, well, we did start with that.) Really, instead, I've been crying.
I keep thinking, “Right. Today is going to be better than yesterday.” Then it isn’t. To give you a bit of context of “normal” seizures for Eloise: Worst seizure control time (pre correct meds): December 2021 — 51 seizures Best seizure control time: May-July 2022 — 1 seizure total August — 12 seizures September (she... Continue Reading →
Man it’s been a rough season around here. The good news, I hope, is that it’s just a season. I had planned to write about our shorter-than-expected long Tartu hospital stay. But that plan got derailed yesterday when seizures started. But let’s give you a little background. A few weeks ago (after that weekend of... Continue Reading →
Thankfully, most days with Eloise are great — fantastic, even. But not all days are all good. Today Eloise went to bed not having had supper. And, spoiler alert, it wasn't because she being punished.
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 →
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.
I feel like this video sums up the spirit of Eloise's week well. Eat food? Nope. 🤔 Eat bath book? YES!!!! 😃 Sigh. Teething babies.🤷🏾♀️
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.
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.
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.
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.
I've noticed that, as a parent, when your kid is in pain you want to rush in and take it away somehow -- to wave some magic wand that removes the root of what's making your baby hurt. If I'm not mistaken, it's starting to look like that's an impossible wish.
Eloise The Tiny Fighter 