Iowa City day today. Kiran met with a dietician, gastroenterologist, speech-language pathologist, and psychologist to get some fresh sets of eyes on where he’s at with his feeding.
We basically left with affirmation that we are doing all of the right things, and there isn’t anything different – or more intensive – we should be doing right now. His oral-motor skills need to strengthen and progress before we could really move forward with anything behaviorally. Also, weaning calories off the tube at this point wouldn’t do any good because he isn’t taking enough volume orally to start making a connection between hunger and oral satiation of that hunger. The kid just needs more practice with eating effectively.
The psychologist gave us some good instruction that we can start shaping behavior – with facial expressions and our voice – with things like his piranha biting on the spoon or wanting to do everything himself. Though I do this type of shaping in other areas (or try – hair pulling continues to be a huge issue), I hadn’t thought to extend it to mealtime behaviors. I think my focus had always been on making mealtime fun and directed by him – but she’s absolutely right – he’s 2 1/2 in 2 days, and it’s time to start shaping behavior in all areas.
Of course, they want to now become a part of his care, so we will meet with the feeding team again in six months to see how he’s doing and potentially re-evaluate.
In other news – just received an email almost 2 1/2 years in the making – Kiran has been approved for respite care! We have been allotted 50 hours a month, and his longtime babysitter and friend, already a respite care provider, will be providing the care. So excited they will get to have regular time together again, as their relationship is truly special.