WOW! So do you go back to the continuous feeds when she's dumping? That she is able to meet her nutritional and hydration needs, atleast at times, with six feeds a day sounds like great progress.
We haven't been to an intensive program. Our girl had Necrotizing Endocolotis shortly after birth, so she never actually went on a bottle. Once her intestines healed after her initial round of surgeries, they tried, but she wasn't able or wasn't willing to swallow. We weren't in her life back then, so are information is a bit fuzzy. She continued having issues with bowel perforations and had several more resections, so ultimately she became dependent on TPN (intravenous nutrition) and that destroyed her liver. We're almost one year post transplant now. At 18 months she went off the TPN and has been exclusively tube fed since. Up until about a month and a half ago, she was continuous.
In addition to the transplant issues, she has short bowel syndrome (approx. 20% of her short intestine remains and she has intermittant problems with dumping as a result - that's gotten much better since we've been able to give her solids), reflux, BPD, pretty extreme allergies (but she's been off of breathing treatments since 18 mons of age), expressive language impairment (very common for a tube fed child since the muscles in their mouths don't develop through eating - we've been fortunate in that her receptive language seems on target), plus a few more.
When we started feeding therapy with her at 14 months, she was seen at Monroe Meyers. It's a development institute attached to the University of Nebraska Medical Center where she had her liver transplant. She did pass a swallow study at that time, but still gags unless the food we give her is really thin. Things have been slow going and yet rapid... all things considered. We were told not to expect her to be willing to eat before her second birthday and that she would probably require continuous feeds atleast at night for several more years, even after she does start to eat. If we can make some progress with drinking, her team is considering working toward getting rid of the tube all together! Our next appt. is in January. She wants to drink, but doesn't know how to suck... just recently we've gotten her to close her mouth on a sippy cup, so like I said, we're hopeful.
I imagine that your dd's issues with receptive language make things difficult. One of the things that really helped in our fd's progress was that she began having a strong desire to imitate. Right now, we spend upwards of four hours a day working on eating and activities to aid feeding. In addition, at this point, most of her play centers on eating activities... she loves to cook and feed her baby!
One of our big successes was when she allowed us to brush her teeth with a dry toothbrush around a month ago!
While I hope that an intensive program won't be a necessity for us (unless she complete stalls out on her progress), I am interested in what it entails. I'd like to hear what they do that makes such a drastic difference! It's frustrating that feeding tube dependency isn't all that uncommon and yet there isn't alot of information to guide us. Even our occupational therapist told us that there's not alot out there that she can refer us to.
Regardless, it's always nice to talk with others who have been there, done that.