overdue update

It's been a week already since Toby's second and latest visit to the developmental clinic.

Recommendations from the visit are:
continue with physical therapy (We were hoping to give this up now that he walks and crawls.)
speech therapy (We are still working through the insurance process to get this set up.)
occupational therapy for oral motor development since he also has low muscle tone in this area.

Additionally, the doctor was concerned about his weight. Toby had gained in the previous 2 weeks on the recently increased tube feedings and weighed in about 20 lbs 11 ounces. But since his height has increased quite a bit in the past months and his weight hasn't, they now describe him as "wasting". The nutritionist was called in again. There were also some closed door consultations down the hall with the pulmonologists, including his own. They have decided on a regimen of increased volume and also higher calorie formula.

We are working now on a new schedule at home to try to get it all in him comfortably and still allow him to experience enough hunger during the day to encourage "normal" eating. He has been much more open to trying new foods but still within limits.

We will return next month for a visit with the pulmonologist and meanwhile will be working on our current assignments.