Children's Hospital Feeding Team

For the past month, we have been working with Donna Registad (occupational therapist) at Kennedy Krieger Institute and Laura McWade (feeding disorders coordinator) and Johanna Motz (speech/feeding therapist) at Children's Hospital in DC.  Donna, who has loads of experience working with feeding disorders, helps Joy with her oral-motor skills (spoon, sippy cup, textures and sensory issues), Laura monitors the medical aspects (e.g. reflux, hydration, calories) and Johanna gives us support and advice on feeding.  They are absolutely wonderful and I can't say enough about them.  They respond to my emails during the week, late at night, and on weekends, and overall, genuinely care about Joy.  Overall, I couldn't be any happier to have them by our side.

Yesterday, we also had the privilege of having Joy fully evaluated by Dr. Irene Chatoor and the rest of the feeding disorder team at Children's Hospital in DC. Dr. Chatoor is a world-renowned physician who specializes in feeding disorders. She has written many books and we were impressed by observations and advice. Dr. Chatoor and the team expressed optimism that Joy would continue to improve, unlike some of the doctors we had encountered in the past.  I think that's the first time that anyone in the health professional field has expressed hope for Joy.

When Joy was admitted to Georgetown in January, one of our doctors told us to consider getting the G-tube because it would take years before she would ever eat again.  Joy is resilient (and stubborn) but she has already shown us glimpses of hope.  We recently cut 20% of the volume she receives through the feeding tube along with feeding her every 5 hours instead of 4 hours.  We now notice that she is more interested in eating and drinking her formula.  Yay!