I'm really sorry to hear about your little girl being diagnosed with NKH. We have a 15month old son who also has NKH, he was diagnosed at 8 days old and has the very severe form although he does now feed by mouth, cries when he us unhappy and hits toys that are near him. He has a few fits a day although some days he has none at all.
Is your little girl on medication?
There is a great support network, the NKH network and Judy Clifford will put you in touch with other families who might live near you.
It's really hard because like you, we just don't know what the future holds for our son but all we can do is make him as comfortable as we can and enjoy every day we have with him.
All the best and let me know if you have any questions.