Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
“It’s been nice to have a little bit of a break from Eloise problems.” I said to Brian Sunday. We both paused, looked at each other, and started laughing. If a week with 2 hospital visits (one planned, one emergency), Eloise’s head covered in mosquito bites, 4am wake-ups every day, diarrhea still continuing into its... Continue Reading →
This last year has been a tough one for sweet Eloise and us as her caregivers. But there were still joyful times even amidst all of the pain and tears. So I decided to find a few videos from every month, to help us remember some of those good times. But also write a little... 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 swear I remember reading long ago that parents were supposed to look forward to a golden period -- a few months after your baby was born but before they learned to crawl. Because your baby would laugh and smile and coo but weren't yet at a place where they were mobile and constantly destroyed your house. Well, I think we’ve finally made it to that golden period in Eloise’s life. And there are so many things to celebrate in its midst.
Thursday was a sacred day. As I made scrambled eggs for breakfast, Eloise happily rolled around on the floor -- entertaining herself with whatever objects she found nearby. She seemed so happy that even once the eggs were done, I decided to take a few minutes to empty and re-load the dishwasher. Then I sat... Continue Reading →
It feels like Eloise's development has slowed down a little this last week. Other than the fact that we can now cut several of her finger nails without screaming (thanks in large part to her beginning to touch different textures with her hands, which helps her get used to something touching them). And the fact that she hasn't had a seizure for over a month now -- the longest she's gone without them since they started. Regardless of it seeming like her development is slowing down, though, there's a lot more stuff that IS speeding up.
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.
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.🤷🏾♀️
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.
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.
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.
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.
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.
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.
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... Continue Reading →
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... Continue Reading →
Eloise The Tiny Fighter 