Dear Blackflip,
By the sounds of it, you are are doing your utmost as parents and are going to enough professionals.
The quality of the medical/health profession is Australia is high so it is safe to assume these people know
what they are doing and are giving you their best.
They cannot help you with the acceptance and the sadness this must be causing.
Not knowing is the worse. Not being sure of what the future holds. I have often heard people say this.
Most people prefer hearing a "bad diagnosis", to not knowing. The problem is that is it not always
that easy to know what is wrong. And you do not want to hurry people and get a wrong diagnosis.
I am glad for you that he laughs a lot. That will be of some comfort.
I wish you all strength and patience, you will probably be needing a lot of patience.
I do agree with the notion that there is no better means of communicating than touch.
Touch him everywhere (not only feet and hands), move him around,
love and cuddle him....find out what he really likes you to do.
I am very sure he should be able to let you know what he really loves most.
kind regards and wishing you all the best. Esther