We went to Robbie’s outpatient Dietitian/Nutritionist Eval today and she cut his tube feeds even more than they did in the hospital because he’s gaining so quickly. A problem he’s NEVER had in his entire life. He was labeled Failure to Thrive with severe reflux as an infant, which is why he was hospitalized at 3 months old and had his G-tube/Nissan Fundoplication surgery. Look how little he was, not even on the growth chart.
He’s come a loooong way in his short 2.5 years, but the last month has blown us away. Prior to his inpatient intensive therapy he was 100% G-tube dependent getting 1,000 mL of Nutren Jr with Fiber formula and 420 mL of additional free water each day. As of today he will get 750 mL of his Nutren formula and 410 mL free water as well as around 150 calories eating by mouth...a 25% cut in his formula!
This new feeding/back to school/sports schedule is REALLY hard for me to keep up and I’m sleepy-sick and drowning trying to play catch up around the house, but it’s worth it for the progress we’re seeing with Robbie. Now that all of the outpatient evals are done the therapy schedule will start up soon. OCH is hoping to start ST for feeding with Vital Stim and OT a few times each week and also an Intensive Outpatient Feeding Therapy for 5 weeks this fall and 3 weeks of CIMT (constraint therapy for his right arm to force him to use his left arm) at the beginning of the year, around when he ages out of ECI and hopefully starts PPCD preschool. This is our big push to do as much as we can by January when the school schedule makes it harder to fit extra therapies in. Onward and Upward! #Arthrogryposis #AMCstrong
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