Yesterday I fed Maggie a full jar of porridge. Followed by half a jar of egg custard. It doesn’t sound much but, for her, it’s an incredible amount.
She managed this partly because I decided not to plug her in for her lunch time feed. So she was hungry – something that, due to her strict feeding regime, she’s never really been.
As I said in the previous post, this is still early days. As things stand, the food she eats through her mouth won’t provide her with the amount of calories she desperately needs. So we can’t stop the tube-feeding just yet, if ever. She also needs water and liquids, something she’s not yet capable of swallowing successfully.
The thing is, the stupid feeding machine and the constant plugging in to her stomach is the only artificial intervention she has. She doesn’t need to be attached to monitors or oxygen or anything like that. So her being liberated from it will be a very big deal indeed.
The food through her mouth also seems to be making her happier. Her reflux seems to be significantly reduced so she’s a lot more comfortable. Which means she’s sleeping better at night.
It’s one of the things that’s always bothered us: that the first two years of her life were ruined by her digestive problems: the constant vomiting, the reflux, the all-round misery of being in pain and the lack of sleep that came out of that*. It severely impeded not only her general happiness and well-being, but also her crucial developments. We’ll never get those all-important first years back.
But still, we’re over the moon that things are starting to improve.
* Two colons within a single sentence. Awesome, as they say.