Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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 told Brian, "I think every seizure she has during a day diminishes my emotional/mental capacity by 5-10%." So, on some days like yesterday, when she had only one, I felt pretty okay. But on days like Friday, when she had 7, I felt pretty drained by the end of the day.
At times, I swear our life is a soap opera. It's like a strange telenovela written in a mold-infested basement by an author who lives off caffeine and cigarettes. So many unexpected twists and turns -- not all of them pleasant.
I've noticed that, as a parent, when your kid is in pain you want to rush in and take it away somehow -- to wave some magic wand that removes the root of what's making your baby hurt. If I'm not mistaken, it's starting to look like that's an impossible wish.
Eloise The Tiny Fighter 