Cutting down the tube feeds

Had a good appointment with Dr. Cockrell (pediatric rehab and development) and Marta the dietician. Because August’s weight gain has been good over the past six months and he is healthy and supple, they are supporting our request to cut down on tube feeding instead of increasing it. This is a big decision for them to make after three years of struggling for every ounce of weight gain.

August had been receiving 900 mLs of blended food–600 overnight and two 150 feedings during the day. We are now doing four 150 mL feedings over the course of 24 hours. Our goals are to get August to sleep better and to motivate him to eat orally. So far so good, but he was awake at 4 am for the day. Awake and ready to party. He asked for food several times this morning and actually ate some. Could we actually be catching a break?