EEG

By Melissa on August 16, 2011 in Down syndrome

I haven’t written anything in a while. I could say that we’ve been busy, but while that’s actually true, it’s not the heart of the matter.

Truth is, I’m worried about my girl, and I’m afraid to put it in words. I don’t want these worries to come true.

Not too long ago I posted that we found out that Rowenna has hypothyroidism and we started treatment. A tiny half of a pill each day, and she started to perk up a bit. But then she hit a plateau. She went from sleeping 12 hours a night to 11 hours, and from napping 6-8 hours a day to 5-6 hours.

And so it continues. It’s been well over a month since this started, and in the last week we’ve really started to see a decline in Rowenna. When she wakes up in the morning, she has bags under her eyes. She plays for 10-15 minutes before putting her head down for a brief rest. Her eyes are red-rimmed and puffy. She’s pale. She’s getting frustrated and irritable. But the scariest thing, the hardest thing is to see her zest for life slowly diminishing. My happy-go-lucky, giggly little girl is fading and this momma can’t stop it.

That’s not to say she doesn’t have her happy moments. But they’re becoming few and far between. And I’ve been following her around the house and around town with our camera to capture these moments because it’s breaking my momma heart that she doesn’t sparkle the way she always does.

Today we went for an EEG to test for possible seizures. We’ll get those results in a few days. We also have a sleep study on the horizon. And from there, I’m not sure. We’ll wait and see what the tests show and then we’ll keep striving to figure out what’s going on with my girl.

At this point, I’m not sure what to think. I just want Rowenna back.

In the meantime, amongst the worry and the appointments, we’ve gone on a few adventures: