My daughter was a 33-week preemie and hated to be fed. We were discharged from the NICU without reliable feeds and tried to outrun a feeding tube for years. She got one when she was 2 1/2 and made tremendous progress. We also fumbled with some not-so-knowledgeable professionals who should have known better, but we finally found a good feeding team when she was 2.

After intensive feeding therapy at age 4, we got to wean off the tube and she is now eating typical food in an almost typical way. She has overcome GERD, oral motor issues, slow motility, texture and flavor aversions, and all the learned associations from those.

It’s been quite a journey and as were living it there was nobody to connect with to try to find a better way or just a place to vent. I volunteer now — my daughter is 15 — to help make sure no family after us fumbles the way we had to.