Today went SO well! She did great in the first session - they upped her from the first step of "2 pea level" to "full spoon level" and she ate every bite they gave her without any resistance or refusal. Her second session she had already moved up to "rounded spoon level" - meaning she gets a rounded spoonful (a pretty big mouthful) and she did great for all foods but the rice. They puree everything and she gets a fruit, veggie, protein, and starch in each meal. She did not like the rice at all and that came back out every time, but she did great with the rest.
She had her first weekly OT session during her 2nd break....it was horrible. A few minutes in I was desperately wishing for our own OT, who is gentle and sweet but firm and very good with Ruthie. Most importantly, they have great repoire together. This OT was in her face and in her mouth from the beginning and she HATED it. The more the OT tried to explain what she was doing (and therefore holding Ruthie's face in both hands and NOT doing anything) the worse it got. She was hysterical and reaching for me and pushing her away, and the OT was trying to explain to me the reason my child was crying. It went on like that the entire 45 minutes and I am already dreading next week's session. She wanted her to practice her t-tube bites and was trying to explain to her what to do (while she was hysterical) and I was trying to use the same verbage we use at home so Ruthie would know what she was supposed to be doing and....it sailed right over OT's head. Sigh. Poor Ruthie had puffy eyes and a red nose when we finally got out of that room and she didn't get any break at all to play. :(
The third session was a little tearful and she resisted a few times - partly because she was exhausted from the hour of sobbing she'd just had with the OT. She still did well with the rounded spoonfuls. She took a good nap afterward and was a little happier for the 4th session. She started refusing a little toward the end of that session, but I can imagine she was super full. She's doing better with her therapists and they are doing much better with her - learning what she likes and what makes her happy and how to motivate her verbally.
During her breaks she has the opportunity to play in several places - the parent lounge, the playroom, or outside on the playground. The parent lounge hosts the other 5 children in the feeding program, and Ruthie is the only neuro-typical child there right now. There is one child who puts up a major fuss when his therapists come to get him, and in the middle of one of those fusses this morning, he managed to kick Ruthie in the head and knock her down. I think it scared her more than anything else, but the nurse came to check her out and she seems fine. I know he couldn't help it but it's frustrating when the other parent is clueless that their child needs to be led away from the group before being taken out. That same child also shoved Ruthie to the floor in the afternoon, in an attempt to get away from his mom.....poor girl; she's had a few rough moments today.
Her total grams today? Brace yourself.......270!!!! That's an ENTIRE tube-feeding plus another ounce!!!
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