6/3 Continued Progress

Josie’s doing well. It’s been a few days since our last post and since she’s not had any real negative changes…only positive (mostly). Her vomiting has been way better. I’m not sure she’s thrown up in three or four days now, which is pretty good news. Her BMs have been about the same...frequent and soft, so that’s still sort of a problem. Her appetite is still just north of zero…she’ll say she wants to eat something but then it’s one bite and done...a real issue we need to get a better handle on.

Her little attitude has been pretty spunky and generally good. Just don’t get on her bad side though – just yesterday her big brother, Trip, was in a bit of a snit and Josie said something to him as he stormed by and he snapped at her and told her to shut up…there was a slight pause, then Josie screamed “YOU SHUT UP!”, then Mr. Angry yelled back “NO, YOU SHUT UP!!” and as I heard this exchange I started giggling from the other room thinking that Trip has tangled with the wrong chick… because there’s no way she’ll be backing down. A couple more angry and escalated volleys back and forth and the 11-year-old was in tears. A sibling spat which was nothing but humor to us (but not them).

Josie’s leg is healing really well. There’s been virtually no pain the last few days and the soft immobilizer cast has been off much of the time. We keep it off while she sits down, but then she’ll maneuver her way up onto her feet and before we know it she’s hustling back and forth along the couch without problem, so I guess that’s OK (but don’t anyone tell the Doctors, they may think poorly of us if they know we don’t follow instruction always). Again, I wish the rest of her would heal as fast as her broken leg has.

She’s getting a few splotchy splotches on her skin (picture). There’s a good sized splotch on the front of her right shoulder which’s been around for about 10 days now and seems to be getting a little worse. Also, the bruising from her Hickman port, removed over a month ago, is still clearly visible about two inches below that right arm pit. And her veins where blood is drawn from her arm are still pretty badly bruised (not pictured). All seem to be telling us that her skin problems are still problems and her disease is still active. We’ll see what Dr. Vehe has to say about all that when we see him on Wednesday.

The good news though is that her strength seems to be improving significantly. She’s able to bend over and pick things up off the floor with much less discomfort than before. She’s still incapable of getting up off the floor though, but I would say that’s not far off. Her upper body strength is way better, and I think as soon as she can really go on that leg she’ll be rapidly improving those legs too.