These are common problems for babies who were tube fed, as well as babies who have or have had reflux. We decided to get some professional help, in the form of an assessment from the state's Early Intervention program.
A team of two therapists and a social worker evaluated Lexie during a two-hour appointment. They documented her strengths (she's advanced in communication skills) and they noted their concerns. The first sentence read:
Alexandra has a diagnosis of prematurity, which may affect her development for many years.I felt both validated and saddened by that sentence. I felt validated because, when I tell people about Lexie's challenges, they often like to say something to the effect of, "yeah, but full-term babies have those problems too." I don't understand the urge to minimize the effects of prematurity. Yes, full-term babies have problems too, but how is that relevant to little Lexie? Maybe it's a misguided attempt to make me feel better about the situation.
At the same time, it was hard to read that statement. I knew it was true, but seeing it in black and white made it seem very official. I'm still hoping that this is the extent of her issues (*hope hope hope*) and that she won't have any learning challenges when she gets to school. I don't like to think about that possibility, but I know we must be vigilant. Whatever happens, we'll get her the help she needs.
The therapists estimated that Lexie is at a 7-month level in the area of "self-help skills: feeding," which qualified her for speech therapy. (It's not for speech -- speech therapists actually work with all manner of oral disorders in babies, including feeding issues.) They also diagnosed low muscle tone, but she is doing the right things on her own to build up her strength, so no therapy will be required for those particular issues.
The assessment was a month ago, and we are still on the waiting list for a therapist. Wish us luck -- I'm really looking forward to seeing Lexie eat a cracker on her own some day.