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 →
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
Friday I got a video message from Brian while I was working from my company's Tartu office, "Hey, I'm gonna try to capture this. She's doin' something weird -- like you almost just saw it there for a second. Like she's trying to bite her fingers and then just starts shaking." I watched the video of this new thing happening with Eloise and my stomach dropped. Something was wrong. Very very wrong.
I swear I remember reading long ago that parents were supposed to look forward to a golden period -- a few months after your baby was born but before they learned to crawl. Because your baby would laugh and smile and coo but weren't yet at a place where they were mobile and constantly destroyed your house. Well, I think we’ve finally made it to that golden period in Eloise’s life. And there are so many things to celebrate in its midst.
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.🤷🏾♀️
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.
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.
I can’t remember the last time I made a New Year’s resolution. And I never really understood that trend to pick a “word” for the next year. Yet here we are. With a word to help guide our lives in 2022. But it means way more than I’d ever imagined. And I think it has the potential to change our lives.
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.
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 →
Eloise turned 7 months old yesterday. Sadly, though, this past week has been a rougher one for her. We seemed to have moved backwards a little on the pain front. The good news, though, is that we moved forwards in a few other pretty great areas. Eloise through the months. ❤️ Steps back: Food and... Continue Reading →
This last week, Brian and I just kept locking eyes, laughing and saying, "She is doing SO great!" Gosh it's been good for our souls. https://videopress.com/v/5DicIO1S?resizeToParent=true&preloadContent=metadata Brian has quickly noticed Eloise likes his beat-boxing. Those giggles -- we live for them. I have now seen that a number of kiddos with her deletion didn't laugh... 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 →
A week after we got Eloise's diagnosis, a wise fellow named Jeff sent Brian and I a podcast suggestion: Awesomeology (GRATITUDE) with Neil Pasricha. (Yes, for all of my [Transfer]Wise colleagues, THAT Jeff.) I was still in shock and in a deep, dark hole of grief when he sent us that fateful message. But, at... 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 →
Eloise The Tiny Fighter 