Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 →
As far as I could tell, the only areas I had Brian beat in the parenting department were milk production and the uncanny ability to hear Eloise waking up in the middle of the night. (Brian can sleep through anything.)
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 →
For a mom of a special needs baby who still relies wholly on breastmilk for sustenance, the COVID vaccine debate hasn't been as simple as "trusting science."
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 →
I brought my nice camera to the hospital. Yet it sat inside my suitcase, untouched, for our entire 11 day stay. Why? Because I didn't want to remember
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 →
After setback after setback, I feel hesitant to say maybe the food situation is getting better. But. Maybe the food situation is getting better. At the very least, she had less pain episodes this week.
Week 23 was not full of the breakthroughs I expected. In fact, we had some pretty big setbacks. But it wasn't all bad.
I’ve been realizing that everything I do with Eloise comes with a cost. If I’m rocking one thing, I’m failing at three others.
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 →
Original post on Eloise's facebook group a little over a month after we found out about her diagnosis. I had a lot of dreams about what it would be like to be a mom. Out of them all, what I imagined most was the first year of our relationship. I pictured it far more than... Continue Reading →
This was original posted on facebook in 2021 around a month after we found out about her diagnosis. This week was both wonderful and weird At this second, most of the time I just feel like a normal mom. Eloise is literally breastfeeding 95% of the time she’s awake these days. (And, unlike her bottle... Continue Reading →
KNOWING VS NOT KNOWING One Mom of a 17-year-old boy who has the same deletion as Eloise recently said, “Wow, reading your birth announcement made me realize how much more information you have at this point than we did years ago. Back then there was almost no information out there. I’m not sure if I would... 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 →
March 28, 2021 Originally posted on facebook in 2021 the same month we received Eloise's diagnosis. It's incredible what sleep will do. I've had almost 6 hours of sleep for 3 nights in a row. Thursday and Friday night, she surprised Brian and I and slept for 6 hours in a row. Saturday night she... Continue Reading →
March 20, 2021 This was originally published on facebook shortly after we received Eloise's diagnosis in 2021. So much to write. So little time. https://youtu.be/dPsNhKL27r4 This week, according to "wonder weeks" she should have given her first smile and tracked objects for short periods of time with her eyes.Smiles have not arrived yet, but apparently... Continue Reading →
This was written on facebook about a week after we got Eloise's original diagnosis. For Eloise, I’d always thought the formula looked like this: Hope = Eloise will be a healthy “normal” kid (or, well, let’s face, it, extraordinary is what I was imagining since she’s ours) But it just can’t look like that. I don’t... Continue Reading →
Picture of a freshly-showered, hope-filled Mallory from earlier today. And a cute baby Eloise who had a wonderful, fairly calm and happy morning. Because we had no idea what was to come. Maybe we were in denial, but we never expected this.
Saturday, March 6 2021 This was originally posted in Eloise's facebook group a month after she was born, and before we knew her diagnosis. I've been up since 3am with only 1 coffee. But it's going to be okay. We're going to be okay. Just when I thought I had it all figured out. Tuesday... Continue Reading →
It has been a whirlwind since Eloise finally arrived home. There is so much to update on. Learning how to make life work between Brian and I with almost no sleep. A fussy hungry baby. Our first visit to the specialist doctor. Pumping pumping pumping. And so much more.
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 