As I was talking to a few of the ROHHAD mom's tonight I realized a few things we are still waiting to see since treatments. I'm not sure if the new ROHHAD children have these issues or not but other than eating/drink and weight we still haven't noticed a change in:
1. pain sensitivity - she doesn't really feel pain unless it's major
2. crying or producing tears
3. knowing when she's cold
4. voice modulation - she talks loud
Happily there are a million more symptoms we can see have improved. Not that I think it's a requirement to be able to cry it's just something she has never done in almost 6 years. What child never cries?