Thank you for the replies and the welcomes.. Look forward to chatting with you all. Initially when we started weaning DC off the feed he could afford to lose some weight, now he really can't. He has lung disease, and has quite severe bilateral Pectus/Harrison Sulcus, the weight loss has just made this far more obvious than it was when he weighed more, friends have started to comment on how thin he looks. He just didn't look well, dark baggy eyes, just not his usual self.
DC has a bit of a complicated history, the bulba palsy affects his swallow, he's always been risky to feed, but despite repeated bouts of puking, pneumonia etc.... we've been lucky that he's never developed any aversions to food, he's quite aware of what he can and can't eat, & in the last 10 years or so he has tried and managed "harder" foods. So he does eat more variety now than he did 10 years ago.
He's been back on the feed about 6 weeks now, and I think maybe we have to leave the weaning for now, GOSH did tell us when he was diagnosed that he might never be able to eat enough to sustain himself, if I'm honest he probably doesn't eat enough to replace the calories he's losing in the feed. Maybe we can try again when he's stopped growing!
Sneezecake, DC is formula fed, he's been on scandishakes to up his calories as well, initially this was given to supplement the missing formula calories, to prop up his weight. We also struggle with volume too, anything beyond a certain quantity (about 200mls) has him puking it back, for example we went to Pizza Hut, he had nachos for his "meal" - loo/puke break - ice cream factory - loo/puke break! So we do have to be very careful about the quantity he consumes in anyone go because it doesn't stay down.
Anyhow I've waffled lots, thanks if you've got to the end of this