Jordanigma

Jordan on Day 1 of her ACTH treatment -- look how skinny she was then!

Jordan today, 43 days into the treatment, and PUFFY.

Growing out of her clothes at record pace, and a real handful to hold and carry around. Jordan sits on the deck "watching" Kate & Avery paint & jump while getting some snuggles in with Nana Noma.
Jordan's other health issues are not helping us relax & focus on getting her through the day. The mysterious UTI and the enigmatic crystals in her urine have jumped to the forefront. I spent most of my waking hours today on the phone talking to doctors and laboatories, coordinating lab orders, and scheduling appointments for more tests & imaging, mostly for her kidneys & bladder. There are now 5 doctors looking at the crystals in her urine trying to make sense of them. One of the docs is new to the team, and when he heard the summary of Jordan from our pediatrician, he actually asked to see her and work with us for a diagnosis. He's a well respected geneticist from OHSU, so we'll see if he has any ideas about Jordan's condition.

Check out those cheeks! They're amazing. Now, if only her brain would grow at the same rate. Or at least at the same rate as her eyelashes (which are now just bizarrely long).
And speaking of geneticists, our doctor at UW called and is ordering more tests. He admits he's just trying to rule things out, because the tests he ordered don't really match her symptoms at all (Prader-Willii Syndrome & Carbohydrate Deficiency Syndrome). We're really dredging the bottom of the barrel at this point. I guess he must have a plan, even though I don't understand it.

As usual, back to the drawing board. Nothing about this kid is usual, even her symptoms don't seem to follow conventional wisdom. So the more docs the better -- maybe somebody will be able to recogize something new, or something rare. It's scary to think about getting a diagnosis for her, since many things are so scary to have. But in a way it'll be a relief to know what to expect.

Jordan's tummy time seems to help reduce the screaming, but she spends most of the time flailing her head around and rooting like a newborn. At least it's basically quiet activity for the most part.