“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 think we’re turning a corner 🤞
15 months: Digging roads for Eloise
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.
One year after Eloise’s Good Friday birth announcement
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.
61 weeks: What’s the point of eating?
I feel like this video sums up the spirit of Eloise's week well. Eat food? Nope. 🤔 Eat bath book? YES!!!! 😃 Sigh. Teething babies.🤷🏾♀️
56 weeks: Teething, miracles, and waiting
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.
55 weeks: 17 days seizure-free
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. 🤞🏾🤞🏾🤞🏾
54 weeks: Exhausted yet hopeful
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.
53 weeks: Therapy reset
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.
52 weeks: We ❤️ our virtual village (you)
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.
51 weeks: Feeling more hope
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.
45-46 weeks: Still much to celebrate
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.
Control is an illusion
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 →
34 Weeks: The big solution
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.
33 Weeks: A real life telenovela
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 →
32 weeks: New (good) problems
We’ve got a few new problems. But they are ones I’m glad to have.
31 weeks: Where has baseline gone?
I still cannot for the life of me imagine why anyone who doesn't have a newly diagnosed baby with some sort of chromosome abnormality would want to read these insanely boring weekly updates about our lives. I feel almost guilty writing it all up, but it's become a helpful exercise for me to reflect on what went well, and what we may need to focus on a bit more.
Eloise The Tiny Fighter 