Last night we ran water instead of his nasogastric feeds through his tube, to see if this would increase Jeremy's appetite during the day. When he woke up in the morning, he said he was hungry - usually he has no interest at all in eating breakfast! During the day, he also often told us that he was hungry - but when we put food in front of him, he still did not eat all that much. However, at dinnertime he gobbled up lots of pork ("Hurry up and cut it for me, Mummy! Only the white bits, Mummy!").
The dietician suggested that we stop his nasogastric feeds for 2 nights this week, and then see if his appetite picks up and if his weight remains stable. We will give him his nasogastric feeds tonight, and then try water again in a few nights' time.
However, because we put plain water down his tube, it basically went straight through him (whereas the nasogastric feeds have to be processed in his stomach for a while) - this meant that we were more sleep-deprived today than usual, because Jeremy needed to use the bottle more often!