Day 5

Eva's really looking a lot better now. She's neither too thin nor puffed up. I'm with her now and Emily and Sam will come by later. This morning they took blood for the additional genetic tests and put another IV in. Her electrolytes look good.

They've given us an initial diagnosis of B______'s syndrome. I'm still a little skeptical. As nearly as I can understand, it's a set of several related conditions where the kidneys expel too much of some vitamins (potassium) or salt. The type she'd have is type three, or classical B's, which is the least severe and essentially requires some drugs. If we keep a close eye on it, it shouldn't harm her development at all and by adulthood she'd be fine. This is my take on it, but I still am reading and, honestly, the writing on B's all reads like a chemistry textbook. It's rare enough that I don't think they even know how common it is. One in a million? A hundred thousand?

To be honest, I'm also still thinking it is probably something else. With something so rare, I think it's as likely this is a combination of the common (dehrydration and teething) and the slightly less common (urinary tract infection?) or somewhat rare (perhaps something environmental) rather than the truly rare. It's also possible something turned up as a false positive. Anyways, we're getting used to the idea of this. It helps to have nice doctors and a good environment and support community. We're trying to communicate with everyone as much as possible. We won't know on any of this definitively until Tuesday. If it is B's, I know there are online community groups and some other resources, and we'd try to find a specialist on it here or in the States just to get a sense of what's involved.

That's the main news. We're doing all right but are a bit tired. I have a tought time getting Sam to bed and doing Eli's feedings. We're very grateful for our awesome nanny, because we would be toast without her. Sam seems basically happy. He asked for Emily a couple of times. He and Eli still see Emily everyday, but splitting things up is definitely a hassel. We're glad we have a hospital that is very close and not too crowded. Being off the main line means we haven't been overwhelmed by visitors. I'll follow up with more later.