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 →
Today is Easter Sunday -- a day where many all over the world celebrate hope. The year Eloise was born, I made her birth announcement on Good Friday, with the faith that, someday, her life would be a story of great joy rather than of grief and sorrow. As I type, however, that day has... Continue Reading →
For the third time since we came home less than a month ago, Eloise has a virus. Which now means days of almost constant seizures. Considering she just had 5 days in a row of only 1-2 seizures per day and was beginning to act like herself again, this super sucks. So yesterday, as Baby... Continue Reading →
The short story. Eloise’s seizures have returned. We thought it was just an indication she was getting sick and they’d go away again, but they might be here to stay. And treatment options are complicated. What kind of epilepsy does Eloise have? Eloise’s seizures are related to a single gene she’s missing — SCN1A. This... Continue Reading →
Eloise's first 3-4 months were dark for Brian and I. Very dark. Very very very dark. Eloise was struggling with severe reflux provoked by extreme food intolerances. It meant she screamed for hours and hours and hours every day. Every moment she was awake and not crying, we were focused on getting her enough milk.... 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 →
If you’re thriving in this season I am honestly so happy for you. However, if you’re barely making it day to day, know that you are not alone — we're there, too. For many weeks I’d brainstormed ways to get Brian time off. But he’d always refuse any suggestion of rest, saying he wanted to... Continue Reading →
This is part 2 to the story of Eloise's baby brother K entering our lives. You can read Making his entrance -- Part 1 here. Over the last few years, I've noticed many posts in local facebook mom groups asking some form of the question "What kinds of local playgroups or activities do you recommend... Continue Reading →
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 →
Will this baby be as hard as Eloise? Will we be as exhausted? We have no way of knowing until he arrives. But we decided that, this time, knowing roughly some of the worst case scenarios that we experienced last time, we'd rather be overprepared than try to wing it when baby arrives.
Two steps forward. One big step back.
I didn't realize how unprepared I was for the news that came. Estonia is a very tiny nation. It's got 1.3 million people which means everyone knows everyone. Options of many kinds can be limited.
My fifth pregnancy had just passed 13 weeks and it was the night before the genetic bloodtest was supposed to come back. If you asked me that night what we'd do if the results showed some sort of genetic abnormality, I still wasn't sure.
Brian and I did some soul searching Fall 2022. We'd lost 5 babies in 4 pregnancies and had a profoundly disabled daughter. Yet still, our hearts didn't seem to be hardened, even after all we'd been through. We decided it was a sign we should keep going -- we'd handle whatever came our way, just like we always did. Instead, we waited. And waited. And waited.
When Brian and I were going through premarital counseling many moons ago, we were in agreement -- we wanted 3-4 kids. Funny enough, because we were getting married so young, one of my fears was that we'd accidentally end up with far more than 4 kiddos. Yet, within 6 months of our wedding date, we had a long discussion, took a deep breath, and decided it was time to leave babies up to fate. We assumed it would only be a matter of months until we'd be posting our creative pregnancy announcement on social media. Instead, we waited. And waited. And waited.
Tired parent alert. The sun rising earlier means puppy has also been rising earlier. Which means he also wants his morning walks earlier, too. Brian takes him in the evenings. I take him in the mornings. So. Between constant teething for months, Eloise’s newly broken leg, even more interrupted sleep for many weeks in a... 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 →
There's a common narrative I hear nearly every single day from kind hearted strangers or people we know. "She'll defy the odds, just you wait." The narrative, at the core, is the same. "Don't think negative, think positive!" I think the intent is to encourage us, to bring us out of a place of darkness and sorrow and re-direct us to some more light and happy place. Because, without realizing it, as a society we equate disability with sadness and darkness, but "normal development" with achievement and positivity.
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 →
“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.
Back when we learned about Eloise's deletion and what it would mean, I was devastated. There was almost no literature out there because Eloise's syndrome was so rare. From what I could tell, Eloise would never be able to speak, read, write, or just do normal "stuff." My heart was broken. Eloise would never say... Continue Reading →
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.
For most “normal” kids, the most interesting things around them seem to be other humans. But not Eloise. As her vision improved earlier this year, we noticed that in addition to being attracted to lights, Eloise was also attracted to something new — our cat. Who did not exactly return the affection. Soon, though, to... Continue Reading →
Eloise The Tiny Fighter 