Hi, our almost two year old is a member of the feeding tube club. She had a medical condition that prevented her from eating orally, but also developed an extreme oral aversion. When we met her at close to 13 mons. old, she would scream if we would try to touch her lips. We began working with her at that time and have slowly made progress. Less than a year later, she is eating small amounts four times a day and has a ten hour tube free window (she had continuous feeds to begin with). It's taken alot of work and she'll still barely drink and can't chew, but we're very hopeful.
I have a couple of questions for you if you don't mind. Does your dd have digestive problems that require continuous feeds or do you feed her "meals" several times/day? Did she have a medical condition that prevented eating orally or was the tube a result of failure to latch on, swallow, etc? Has she passed a swallowing test?
I'd be more than happy to talk about this stuff with you if you'd like. I know how frustrating it can be to get good information on feeding tube dependency and therapies. I know quite a few kiddos who have been feeding tube dependent for four to five years and eventually did learn to eat, so I really wish you luck!
