Well we are still pushing on. Way back at 6 weeks we were diagnosed through an IBCL with the poor lip seal and weak suck. We have fought thrush, cracked nipples, and reflux.
Finally today, my daughter was accepted into the ECI program for occupational therapy. They said all the muscles around her mouth are uncoordinated and weak. Her palate is wide and high and her tounge is thick and uncoordinated causing her to rub the nipple when she eats. Basicly they told me she has little control over the muscles surrounding her mouth.
They made me feel pretty good about what I have been doing though because they told me they didn't know how she had gained any weight at all.
Now we have some hope of improvement as well as much needed support.