Tag: chromosome deletion

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.

0

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 →

1

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.

1

I realized I have a superpower

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.)

5

27 Weeks: What a weird time

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 →

2

A big change in our lives

"Your job is to find the biggest, most important problems. And solve them." I'm Brian. Eloise's dad. I work as a product manager at a pretty great company. I often get asked what that actually means and, to be fair, I didn't have a clue until I started working at my last company that had... Continue Reading →

8

Re-defining hope

I’ve been working on this post about hope for many weeks, sorting through my feelings. At first, when Eloise was born, I felt sure she’d be okay. But then we got the diagnosis and our worlds fell apart. I stopped hoping for a long while. Yet that whisper of hope has been creeping back in. But so has another voice, which might even be better in the end.

6

Mom guilt 24/7

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.

3

Week 13: She is in so much less pain

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 →

0

Week 11: Wonderful and weird

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 →

0

Dreaming big for Eloise

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 →

3

Week 7: What does hope look like?

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 →

0

Diagnosis day

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.

4

Create a website or blog at WordPress.com

Up ↑