After 1.5 years of miraculous seizure freedom, one finally broke through again. I hate epilepsy.  Early in the morning I woke up and could swear I heard Eloise crying from her bedroom. As I listened again, though, I heard nothing. But I checked Eloise’s Owlet camera and, indeed, she was crying. She’d pulled a blanket... Continue Reading →

Eloise will turn 4 this week. And we need your ideas. Because we still have no idea how to celebrate her birthdays. Or, well any of our birthdays. 🙈 Brian and I have always been rubbish at celebrations any sort of holiday or birthday— we have never given gifts or really even decorated. So we... Continue Reading →

I imagined Eloise's first intensive therapy program would be 2-3 weeks and, well, intensive. Surprisingly, we decided yesterday to end Eloise's first intensive after just 2 days. Why? Basically, this program didn't make sense for Eloise. Even if we'd been able to stay there overnight (gosh lodging in Haapsalu is EXPENSIVE in the summer!), I'm... Continue Reading →

Today Eloise was on the floor, fussing in pain and moving around — typical behavior in this season. Often, we pick her up and try to find and treat the source of pain (usually we can’t 😐). But today I watched instead of intervening right away. And then… Eloise got into a sitting position herself... Continue Reading →

Tired parent alert. The sun rising earlier means puppy has also been rising earlier. Which means he also wants his morning walks earlier, too. Brian takes him in the evenings. I take him in the mornings. So. Between constant teething for months, Eloise’s newly broken leg, even more interrupted sleep for many weeks in a... Continue Reading →

Back when we learned about Eloise's deletion and what it would mean, I was devastated. There was almost no literature out there because Eloise's syndrome was so rare. From what I could tell, Eloise would never be able to speak, read, write, or just do normal "stuff." My heart was broken. Eloise would never say... Continue Reading →