Day 4 of MAC

Today went fairly well. She woke up in an obviously ornery mood and was into e.v.e.r.y.thing before we ever got out the hotel door this morning. 

Her sessions went well. She had some trouble swallowing her applesauce and broccoli (all pureed) in the time-frame they want her to and that brought her percentages down a little, but she is still on rounded-spoon level and they are hoping to take her to a larger spoon tomorrow. 

We had our goals meeting this afternoon and I was so glad Jay was able to be here for that. We met with the behavioral psychologist, his intern (one of R's feeding therapists,) the nutritionist, the OT, and another person I didn't know. They started off by telling us what a great job she was already doing and what they foresee in the coming weeks - we ended up not even having to tell them what we wanted of her before the program was over; we all had the same goals for her, and seemingly very reachable. The plan is to keep her on purees and add a drinking program (through a regular cup, no sippy) until she is taking enough to get off the gtube completely - that could take a week, it could take four weeks, we don't know. However, she is already eating enough to make up for 1/3 of her tube feeds, and that is wonderful. Somewhere in there they will also be working with her on feeding herself with a spoon. The next step will be to stop doing purees during her "meal" times and work solely with the OT (that should be interesting) on chewing table foods, but that food will not count toward her nutrition goals - only for practice in oral motor/eating. During those meal times (when she's supposed to be getting a break to play) we will be feeding her the purees she needs to stay off the tube. I'm sad she wont be getting much playtime, but if it will get us out of here quicker, we'll do it.

Today's grams were good, and while I was a teensy bit disappointed that they weren't more than yesterday, at least they weren't less - they were exactly the same...270 grams today.