We’re home from the Endocrinologist, with more to think about.
He’s not convinced that her growth issue has to do with her steroid issue. It COULD have to do with her nutrition and eating…but he’s not convinced of that either.
We’re doing a full genetics test, along with another early morning cortisol draw tomorrow morning. She also had a bone age test.
I did learn that even when she was still following her growth curve, she was “small” for her predicted height (whatever formula they use with parent height to get the range of how tall a child will turn out) Meaning that even if she had not bottomed out, she wouldn’t have reached her predicted height. (which is between 5’2 and 5’5, or something like that) I think that’s why he’s not convinced that this all has to do with the steroids.
He’s not sure that getting her off the steroids is the best course of action, but will defer to the pulmonologists on the case.
I didn’t walk out of there feeling like we had “ruled out” anything. It sort of feels like he really thinks there’s something more going on, and that really, really frightens me. That whole “we don’t get more than we can handle…” I’m feeling like I’m getting to my end point…I’m frustrated, and scared, and not feeling a whole lot like I can “handle” it. I will…I have to…but, really…how much more can I take?
Perfect Imperfection 
Really, really sorry to hear that you didn’t get any resolution here. If I could fly over and give you a hug, I would.
Thanks. I’m doing ok…still being hit by random bouts of crying…which is how I process things. I’m trying not to stress till we get the bloodwork back…which will be several weeks for the genetic karotype.
I know that feeling of being dealt more than I can handle. But I guess what I would say is it sounds like you ARE handling it, and you will find a way to deal with it as you go along. I like to give myself full permission to deal with urgent things that come up…but to take my time processing them later as I am able. Like right now I’m supposed to go on arthritis meds, which is a bit much, but I figure I can think out the details after I’m on them.
Melissa