hi there jenkeywoo
of course i am not offering a dx or anything but your description of dd sound just exactly like my dd1, she has hemiplegia which is a form of cerebral palsy.
and you are not whingey, you are a worried parent. i remember being where you are now, and the way you describe yourself feeling and thinking is identical to how i was.
but sweetheart, you are in very early days, and the dx will eventually come and you will eventually get your head round it. there is not a 'get back to normal' time, what actually happens is that you develop what i call 'the new normal' the waiting to know was the worst bit for me, then when you get dx you can move forward.
as for looking for info online, trying to dx her yourself etc, yes i did all that too: well, so what, it doesn't matter, if that's what you want to do at the moment, just let yourself. i still scour the internet looking for new info etc. and my dd1 is 8 now. it makes me feel productive, that i'm doing something, that i won't miss out on any new info.
practical things: if someone says you are on a waiting list, don't assume that you are:contact them every few weeks to make sure you are still visible on the list. i found that phone calls were largely ignored but written contact/letters were always taken more seriously.
when you go for your appointment, if you have any doubts about the dx, push for an mri scan or similar, this will give you a definite answer, which is what you need.as you say, cp is difficult to dx, so you are entitled to the proper tests. you are entitled to this, you must be quite pushy:keep asking and writing letters until you get it.we were 'discouraged' and 'put off' from having the mri, but i kept on about it and eventually it was done: it gave us a real answer.
i found these very helpful:
this
this