I just got back from taking Peyton for a swallow function study at Texas Children's Hospital. They wanted to be sure she's swallowing properly when eating - make sure all the right parts are working. Well, they aren't. The speech pathologist called the doctor who ordered the test but he's out of the country. Even though she is eating, feeding her is not without a great deal of difficulty if it's by spoon. She can handle her bottle herself. However, the study showed that she is aspirating a fair amount of food - liquid and the pureed baby food - when she is eating. She is also not using her tongue at all. When feeding by spoon, you basically have to scrape the food off on her upper lip to get it in her mouth and let her take over from there, but she's not using her tongue at all. That means she's just letting gravity make the food fall to the back and be pulled down her throat, increasing her likelihood of aspirating her food. Aspiration of food is probably why she always sounds congested. It is also putting her at great risk of getting pneumonia, which she has already had once back in May. With all her other issues, that is not a good risk to have. The speech pathologist needs to talk to the doctor, but very likely we'll be referred back to the gastroenterologist and will very likely have Peyton put on an NG tube (feeding tube down the nose) for a few months, all while receiving intensive speech and feeding therapy (hoping we can get her in quickly!). After a few months, they'd repeat the same study. So, while she'd be on the NG tube, there'd be no food by mouth meaning her oral-motor skills could potentially worsen since she wouldn't be eating (though therapy would help that hopefully) and she would become more orally defensive. She already is quite orally defensive, so I can hardly wait to see how "worse" would look.
Once again, she takes a few steps forward and many, many steps back. Not at all the news I was hoping for today.