p.s. nutritional update

We left the feeding clinic in January with some changes to try in Toby's feeding plan.  We returned yesterday for a consultation with a nurse practitioner who works with children on the waiting list for the intensive feeding therapy program.  Toby has made significant progress in the last three months.

Under the supervision of his UM nutritionist, we have reduced his tube feedings several times so that he is now receiving only half as much formula that way as he was previously.  We do all of his tube feeding in the evening and night so that during the day, he is totally dependent upon his oral intake.  Together, these changes have greatly improved his appetite and willingness to interact with new foods.  (Interact does not necessarily mean eat at this point;  but even touching and handling new foods is progress.)

He has progressed from eating dry, uncooked pasta to eating cooked noodles.

He has progressed from eating thin, crip potato sticks to eating fresh, hot french fries.  (Just this week!  Hurray!)

He has progressed from eating the crispy edge of the pizza crust to eating most of a piece after removing the topping.

He has accepted small amounts of frozen yogurt.

He enjoyed trying to eat a smoked meat stick, although the texture turned out to be too chewy for  him.

As before, his progress continues to be measured in small increments.  And there are a lot of things he still needs to learn to eat- like fruits, vegetables, and meats!  But his trajectory is definitely in the right direction and we are encouraged and deeply grateful.

Toby has lost weight in the last month or so.  But his nutritionist feels that the gains in other areas justify continuing with the reduced tube feedings.  This is great news.  To have to increase them again would feel a bit like running part of a race and being told   to go back to the starting line and keep running.

The nurse we met with yesterday feels that Toby is on the "cusp" of learning to eat well.  They are going to continue to try to get outpatient therapy scheduled.   Our hope continues to be that he progresses in the next year to the point that the inpatient intensive feeding therapy will be unnecessary.