Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 →
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!
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 →
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 →
The original post in late April of 2021 in her facebook group. In general, she's feeling so much better. I’m still shocked how much less pain she’s in (I’m guessing a combo of this elimination diet paired with “nursing”). Most feedings she still has maybe 5 minutes of crying and pain from reflux or gases,... 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 →
There might be TMI in here for those of you who have never breastfed. So I will label the sections so you can blush and skip that one.
It's Friday, February 5th. And it looks like no one will be coming home today.
Eloise The Tiny Fighter 