Feeding clinic

I had an appointment with Jack's school today at the "feeding clinic". Basically, he is little Mr Independent these days and will not accept any help from anyone for anything. Getting him ready for school in the morning is a nightmare. Even though he has the will, he obviously doesn't have the motor skills to do it himself so it is a constant battle. This transfers to his "feeding". He very vehemently expresses that he only wants to do it himself. He only really has the use of his right hand so he maybe gets a teaspoon or two and still only yoghurt. His swallow leaves a lot to be desired and he still has pretty major tongue thrust. Drinking is non existant.

Anyway, the whole point is that they are saying the longer he remains tube fed, the less likely he will be to come off it. He is 5 next month and has been tube fed since birth. There is no medical explanation, he has just not made any natural progression, so we are looking at years to even get to the point of a possibility where he may take enough orally to reduce his tube feedings or come off it. Pesimistic me agrees with the speech therapist/paediatrician that he has missed the learning window (infancy) so I really don't know what will happen. I hate that tube, I really really do.