Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
It’s crazy how much guilt one simple thing — like when and how the baby comes — can bring with it. Originally, baby boy’s due date was September 3. Then the doctor told me at some point September 1 was more accurate, but it never got changed in the computer — so September 3 it... Continue Reading →
In September, Brian casually plopped down on the couch next to me. It was a really stressful season for us. Brian started. "Hey. I just wanted to get your permission before I bought this thing." Over our 15+ years of marriage, we've always "asked permission" from the other before we buy a large ticket item.... Continue Reading →
Brian and I have spent 16 Christmases together and I can’t remember a single one where we gave one another gifts. I’m also pretty certain we’ve had a home with no tree more often than we’ve had one. You see, I love the concept of Christmas — being close to your loved ones during the... Continue Reading →
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
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 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.
Back in May, the idea of a taking a holiday together as a family seemed impossible. At the time, Eloise still hated being in a stroller or carrier (all 5 carriers we tried) for more than just a few minutes. Not to mention any time we tried to bring her to a place outside our home — like the grocery store — she’d show her displeasure quickly by screaming and arching herself backwards over and over. So the thought of going on a nature walk on a trail or even to a restaurant seemed like a distant dream.
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?
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.
If you know our story, you know we bought a fixer-upper home while we still didn't know if any of our fertility treatments would work. Our house was a project Brian and I could work on together whether or not our dream of having kids ever came true.
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.
This was original posted on facebook in 2021 around a month after we found out about her diagnosis. This week was both wonderful and weird At this second, most of the time I just feel like a normal mom. Eloise is literally breastfeeding 95% of the time she’s awake these days. (And, unlike her bottle... Continue Reading →
The original facebook post made a month after her original diagnosis in 2021. April 7, 2021 Doctors. Therapies. Hospitals. This is already our life. Like I mentioned, Tuesday last week was the orthopedic surgeon who gave us the good news of no hip dysplasia. Followed by a quick physiotherapy appointment. Then Wednesday we saw a doctor at a private... Continue Reading →
March 20, 2021 This was originally published on facebook shortly after we received Eloise's diagnosis in 2021. So much to write. So little time. https://youtu.be/dPsNhKL27r4 This week, according to "wonder weeks" she should have given her first smile and tracked objects for short periods of time with her eyes.Smiles have not arrived yet, but apparently... Continue Reading →
This was written on facebook about a week after we got Eloise's original diagnosis. For Eloise, I’d always thought the formula looked like this: Hope = Eloise will be a healthy “normal” kid (or, well, let’s face, it, extraordinary is what I was imagining since she’s ours) But it just can’t look like that. I don’t... Continue Reading →
Saturday, March 6 2021 This was originally posted in Eloise's facebook group a month after she was born, and before we knew her diagnosis. I've been up since 3am with only 1 coffee. But it's going to be okay. We're going to be okay. Just when I thought I had it all figured out. Tuesday... Continue Reading →
Eloise The Tiny Fighter 