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 →
“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” - Brian
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.
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.
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!
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 →
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... Continue Reading →
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.
She's mostly not eating. Again. These last few days, increasingly it's felt like we've moved backwards in time to a few months ago when it was a constant struggle to get her to eat. When we needed to try every trick in the book to coax her to get close to enough milk in her... Continue Reading →
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.
Gosh this has been a week of extremes for us. Some massive victories and some frustrating setbacks. On the food front The great After last week’s post, a few people sent me to an Estonian website where you can order freshly prepared, puréed, and deep-frozen single ingredient organic baby food. It turns out that they... Continue Reading →
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." This photo kinda sums up our week. I’m happy to be on a... Continue Reading →
Last night, before I went in to feed Eloise for the final time of the day, I peeked in at Brian who was sitting in our office on the couch. With this current diet, things you normally celebrate with —like cakes — are out of the question. So I’d set my mind on the idea... Continue Reading →
Week 23 was not full of the breakthroughs I expected. In fact, we had some pretty big setbacks. But it wasn't all bad.
It's Friday, February 5th. And it looks like no one will be coming home today.
Eloise The Tiny Fighter 