I've just binned all the left-over purple giving sets that used to be connected to Isaac's feed pump. The nutricia rep phoned to see if we needed the pump any more and it was so good to say Isaac is eating and doesn't need a pump any longer. She told me they no longer use the type of backpack that I used to have hanging on the pushchair all the time holding his feed, so that's in the bin too. I have also put all his syringes, tape etc into a bag but haven't quite had the confidence to bin that yet.
It is only just sinking in that we have a boy who no longer needs to be accompanied everywhere by medical stuff. Tomorrow Noah, Isaac and I are going with Paul to New Plymouth (a bit sad when your summer holiday is accompanying a doctor to his clinics!) and will have much less to pack and may even dare to leave behind Isaac's folder of medical letters.
We are gradually learnign to trust Isaac to eat the amount he needs, although I still don't like it when we've just started feeding him and he signs "finished".
Rather than doing a full very messy play picnic, I now offer him an assortment of finger foods on a big plate then to prevent the throwing take the plate away once he's selected one thing to put on his highchair tray. He is trying a selection of different biscuits now and yesterday even put a slice of banana in his mouth.
Isaac now almost always sleeps through the night and awakes happy in the morning - this would have seemed unbelievable to me a year ago. We are even thinking about moving him out of our bedroom at last.
When you feed him now he opens his mouth for the next spoonful - I can remember thinking how wonderful that would be to see him do that.
I need now to get the balance between being swept away by the miracle of him eating and treating him now as a child able to eat autonomously.
143 days....Weird Goal, huh?
5 days ago