It feels like we've had at least a month of KayTar related drama, maybe even two. Nothing major, just enough to make me feel like I've had to be "on" all the time. This week has been amazing in comparison. Her fluid intake is astronomical. She is consistently meeting or exceeding her daily calories WITHOUT Pediasure. She is sleeping through the night without night vomiting. Okay, she is staying up until after 11pm, but she IS sleeping, and she isn't vomiting! I haven't had to bother the pediatrician for anything this week. She hasn't had an episode in 22 days. It is such a relief.
I know from history that life won't stay this way. She'll have an episode. She'll stop eating. She'll start vomiting. She'll refuse fluids. She'll stop peeing. All the progress we've made with her eating will be erased in the course of a week. And then we will start it all over again. It isn't pessimism. It is life. But the break we've had? Priceless. I can't remember the last time she was exceeding her calories or not drinking Pediasure every day. It is amazing. The longer we are able to do this, the better. When the episode finally does hit, she's going to have some nice reserves built up. So even though we fully realize we spend our days chasing our tails with her eating/drinking, it makes it worth it when we can get an edge on what is coming. It feels good.
I do find it a litte humorous that the things she struggles most with on a daily basis are the things most people don't think about. Sleeping, eating, drinking, pooping, peeing. We are talking basic. These are the things babies are born doing. She's two and it is an uphill battle every day. I always took these basic functions for granted, because they are inborn and necessary for life. You'd think hunger=eating, but what if you don't feel hunger? You'd think thirst=drinking, but what if the thought of drinking made you gag? You'd think that tired=sleep, but what if the feeling of your sinuses draining the tiniest bit induced gagging and vomiting? I can't blame her, if I felt things the way she does, I'm sure I'd be just as reluctant to meet those needs. And so we work our hardest to keep her at a healthy level without pushing her past where she can be comfortable. And weeks like this, everything just lines up. It is perfect. So perfect. The whole week has been one gigantic sigh of relief. We don't have weeks like this very often, but when we do it feels like a miracle.