Back in June I blogged about our experience at Bee's repeat video fluroscopy (http://bit.ly/sh76iW) and the results we were given by the speech therapist: we could start with puree consistency and thicker, but no liquids. Bee still aspirates liquids.
So we stuck to it. Kind of.
Bee still will not tolerate puree. She won't let me feed it to her and won't feed herself with it. So instead of starting with that we moved straight on to what the SLT calls 'bite-and-dissolve' food: sponge cakes/fingers, Wotsits, wafers etc. That went much better than the puree so we moved on to food that's easy to swallow like biscuits, crisps, bread, potato, pastry, crumpets etc.
So far it's going very well. Bee loves to eat and will try all kinds of flavours, we've found very little she doesn't like. For a child who's never really eaten she's surprisingly unfussy.
We've hit a little snag with her technique though. Bee can bite down on food with a straight up and down motion (although she prefers not to and will tear off small pieces to put in her mouth) but she hasn't developed the 'round and round' jaw motion involved with chewing food. She never eats anything that could be called a substantial amount, usually a biscuit's worth or a 1/4 of a sandwich, which is probably down to two reasons: we don't think she really understands the idea that the food is sustenance, more sees it as a type of toy or thing to play with and she's never hungry. As she's tube-fed regularly (every 3 hours) I don't think Bee understands the feeling of hunger, or that food can alleviate it. But we can't stop tube-feeding her as that's where she gets her nourishment and daily intake of goodness. So how do we solve the problem? Bee seems to be stuck in a limbo of wanting to eat but not moving any further forward with her technique and understanding of food.
Our problem is complicated by the fact that Bee understands that other people drink and she doesn't. She is constantly asking 'mama ah', which in Bee-speak means drink. It's the sound we taught her to make to pretend she was enjoying her cuppa during 'tea parties'. The guilt eats away at me and I'm dying to let her have something to drink, though I know that her enthusiasm doesn't change her body's inability to deal with liquid.
