Latest Posts
Getting (some of) Eloise back
Once upon a time, we were new parents and freshly grieving Eloise’s diagnosis. I’d found groups with kids like Eloise and seen all kinds of videos and photos of older kids with overlapping genetic deletions and it felt like my worst nightmare had just happened. I remember collapsing in the shower one afternoon, picturing a…
We should get her out more
Once upon a time, any trip outside our home ended in a complete Eloise meltdown. It didn’t matter if it was quiet or loud, light or dark, inside or outside, cold or hot, or she was carried or pushed — Eloise couldn’t handle it. As she grew older, however, things changed and it became the…
Eloise WILL walk one day
Eloise WILL walk one day. Did we ever have a doubt? Yes. But here is why we don’t anymore.
After 1.5 years, her seizure freedom has ended
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…
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Eloise The Tiny Fighter 