We have officially made it halfway through the Functional Feeding Outpatient Program at The Children's Institute. We have made progress, and though small, it is still moving forward. I have to continue telling myself that, because I question myself often whether or not this was the right program for us. Most feeding programs are 6-8 weeks long, and that is the one part about this particular program that held me back from making the decision. This program is only 3 weeks, and knowing Greyson's medical history and struggles, I knew in my heart he would need longer. His speech therapist and I discussed the fact that he would definitely benefit from a longer program, but they don't have the coverage to make it any longer than 3 weeks. There are most definitely benefits to coming here as opposed to a longer program and I am okay with the decision that we made. Many of the other feeding programs are so intensive that there are reports of force feeding, and we did not want that for Greyson. While these programs yield excellent results, we wanted Greyson to be able to move at a rather intensive pace but also more self directed at his comfort level. This program does just that, has high expectations for him, but also takes his limits into consideration. For this I am happy with our choice.
When we began, Greyson didn't tolerate a spoon coming at him at all. In this program, he has taken a maximum of 4 ounces of diluted juice off of a spoon, and has accepted a yogurt/milk dilution, and puréed macaroni and cheese! While he's still not taking much volume of these to consider taking part of his tube feeds away, it is a step in the right direction. The goal is to try to increase volume of some of these foods in order to decrease his tube feeds to begin tube weaning (ahh...tube weaning!). This afternoon he ate two whole goldfish crackers, and handled the bites so beautifully I teared up throughout the entire session (insert proud mom smirk).
We've also met some challenging mealtime behaviors while here. We'll continue to work through his frustrations at mealtime in order to make mealtimes more pleasant (for the both of us). He still has much work to do sensory-wise, and we will be adding once "therapy" session a day for this at home. This means at least one "messy" activity a day (play doh, playing with food items, shaving cream, etc.). We are also waiting for recommendations on what therapists to use when we go home.
We are both very tired today, tired enough to wear my yoga pants (which I may be doing much more often). I'm finding it difficult to shut my brain off at night, so I'm staying up way too late. I'm hoping to get some rest this weekend when Shane and his parents and sister get here for a visit. We are also going to the zoo, so be sure to watch for a post with pictures.
