Welcome Jess and Louise.

Jess - Vent away, this a reason for me starting this thread, I have been stuffed around alot by doctors so I know how you feel and it seems that nobody seems to realise it affects the children.
I just remembered I was meant to have follow up appointments for Matildas kidneys (she has a horseshoe kidney and kidney reflux) and the hospital hasn't arranged the appointments (that were due a couple of months ago) so now I have to drive down (a 4 hour round trip) with the girls for the ultrasound and specialist, it is such a long day for the girls.
I hope you get a all of the appointments booked and the MRI gives you some much needed answers .

Louise - Your little girl has been through alot, some of what your little girl has gone through mine have to so I can understand some of what you have been through. I asked what has caused my girls to have the conditions they have and we pretty much have the same reason 'Sh*t Luck' as it is odd that we have 2 children with completely different defects but no reason for them. Matilda has severe obstructive sleep apnea and they would like her to use C-PAP but she just gets hysterical when the air is turned on, her airway was maintained with a nasopharygeal (sp?) when she was younger but obviously that isn't an option anymore, one of her major problems is breathing difficulties and although we can maintain it well it is preventing her to move forward and so we are stuck with her feeding issues. I look forward to getting to know you and Ella.

Bridg - It is amazing what the specialists can do. I started taking Matilda to physio/ot at about 7 months as she could roll from back to belly but other than that she would just lay on her back, she hated tummy time, couldn't sit or roll from tummy to back, by 10 months she was sitting and then she just took off, it was slow but I could see that it was the physio that was really helping her to progress, her gross motor has been our main focus until now but now that she is walking it is time to shift the focus.

Sally - I am glad to hear the Brendan has improved his speech with the help of speech pathologists, this is our next step. Matilda has hearing loss and wears a conductive hearing aid, she is 22 months and doesn't say much, she says 'Mum', 'Dad', 'more' and 'car' however she does not say them on a regular basis. She does sign some words like 'poo', 'dummy' and 'food' as a way to communicate, however I can tell that she is starting to get frustrated that she cannot communicate as she would like to.