November 6:
A year ago we were celebrating the 1st time Robbie cruised along the couch by himself and was starting to scoot. Today during PT Martha took videos of him working so hard to successfully go up our stairs. Scooting downstairs came quickly months ago but we’ve been working on upstairs for quite a while!
I’m glad to have this success because we’ve hit a wall with his eating. He had huge progress eating this summer and in therapy afterward but a few weeks ago he suddenly stopped and his intake plummeted. We had to increase his tube feeds and he’s regressed even more since his last Nutritionist appt and there is a behavioral component to his refusals. I get it: It’s hard work given the anatomy of his jaw/mouth and he doesn’t have hunger cues. It’s a lot to expect from a 2 year old. I’m just grateful he was so compliant the last few months. Hopefully he will start eating more soon.
In the mean time the question is figuring out how to balance his nutritional needs while encouraging hunger so he is motivated to eat instead of eating just to get to play with a toy if he takes his bites. Also, part of me knows that if he loses weight the Intensive Outpatient program won’t be denied again like last month...but I obviously don’t want to risk Robbie’s health. *sigh* So many moving parts to his care, but today was a win! #Arthrogryposis #AMCstrong
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