We had a couple nights this week only waking up once or twice in the middle of the night, but on average, we get up between seven to ten times a night. The seizures (even though she breathes through them) are difficult for her. We're not sure if it's because she knows they're coming or if it's a vocalization of the seizure itself, but she screams while she seizes. Even though she probably can't understand that we're there with her, we hate for her to be alone if she's frightened, so one of us always gets up to sit with her. It's heart-breaking to watch and not be able to help her. If she were a healthy baby, I could pick her up, rock her, feed her, comfort her. But I can't do anything except put my hand on her head or her back, and ask God to make it stop.
So, yeah. We're exhausted. The more exhausted I get, the more I start to feel like I'm unraveling.
On the plus side, our girl is still so sweet and so beautiful. My dad let me borrow his Flip video camera, so I've been non-stop taking little videos of her. Sometimes I just turn it on and record her sleeping so I can remember her sweet little face and the sound of her breathing while she's sleeping.
Here are some for you! She doesn't move a ton anymore, but she smacks her lips when she's hungry and it's possibly the cutest thing I've ever seen. Except for when she yawns. Which hopefully will be coming soon.