Hyper/hypotonia & visual delay in baby

[Considerphebas]

Hi
I'm not sure this is the right place but hoping for some advice/ support!
DD is 16 weeks and was born 5 weeks early and needed an op and 2 and a bit weeks in NICU
We've been told she seems floppy in the torso- can't support her head or lift it, but 'stiff' in her limbs (dressing is always tough!) She also has reflux and now possibly a floppy larynx as she has apnea episodes after feeding where she struggles to breathe and then wheezes in.
She isn't yet fixing and following but has just started to smile a little particularly at voices.
She rarely cries and has a very soft cry, she sleeps a lot and feeding/ crying seen to exhaust her!
We're waiting for more appointments but they seem to be taking forever and in the meantime I'm in a real no man's land waiting and trying not to worry/obsessively Google!

All I can offer is to keep a diary of your concerns and take videos of your DD and the difficulties you note. It's so easy to forget important details at your appointment. Ask them at the appointment if it's worth doing an MRI scan to see if there are issues. Ask the HV to call and see if she can get the ball rolling for some early intervention.