I Spoke Too Soon

One step forward and two steps back.  I feel like that's how it always seems to go for Rapunzel.  Just when I thought we'd had so many good days, that surely we were getting somewhere, she has a flare today.  This is just the beginning of the flare and when she went to bed, she was scratching pretty heavily, so I fear for how her skin will look in the morning. :(

I can't even bring myself to post more than this one picture.  This was taken after her bath tonight.  You can see her face starting to break out.  Her face is always the last place (and mildest) to break out when she has a flare, so if you ever see a rash on her face, just assume it's even worse on the rest of her body.

The most frustrating part is that we just don't know WHAT is causing the flares.  She didn't eat anything out of the ordinary today - so is she reacting to a food she's not yet been tested for?  Is it something else entirely?  Our appointment with the Immunologist can't come soon enough.

I have a feeling it's gonna be another long night for my sweet girl.