No, we are not going country and western and having a ho down, 'ho dow' is Little A's newest phrase. It is her way of saying "hop down", as in "I want to hop down from the high chair please." The last 2 days instead of whining to get down, she has announced "ho dow" when she has had enough. What an achievement in communication!
As I mentioned last week, Little A had her regular kidney review today. It was uneventful. It appears that her kidney function has stabilised for the moment with a creatinine in the 190's giving her a kidney function of around 21%. All her other labs were similar to last time. Her liver function is still slightly abnormal (and has been for over 2 years now). We still don't know why, but while it is only mildly abnormal we are going to ignore it.
Dr H always asks how A is doing otherwise and often I don't have much to report as sometimes progress is so slow. But this time I was able to tell her how well she is doing with her crawling and speech development. It is so nice to have positive things to report - and nice for Dr H to actually see some of the crawling and talking - usually all she gets to see is screaming at the blood pressure cuff (although there was plenty of that too). The question of when she will need a transplant remains a mystery as usual - but for now things are STABLE and we are HAPPY.