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
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 →
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 →
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?
Sometime during my years growing from a child into an adult, I internalized the idea that I was never doing enough. Besides that -- I decided back then -- whatever I did do was never good enough. If I had a school project, it couldn't just be "good enough," it needed to be over-the-top amazing.... Continue Reading →
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.
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.
It's Friday, February 5th. And it looks like no one will be coming home today.
We brought our camera with us to the hospital. I had dreamed of weary photos of me holding Eloise, exhausted from labor, of Brian bending down next to me laying in the hospital bed, the nurse taking our first out-of-focus photos as a family. But that's not what happened.
Eloise The Tiny Fighter 