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Friday, March 22, 2013

Feeding therapy without food

A couple weeks ago, I had a good chat with Raya's feeding therapist about how to proceed (or whether we should) with feeding therapy. To put it simply, I was feeling guilty about taking up a time slot on the therapist's schedule when there's no end in sight to Raya being off of solid food. When we first took her off of food at the end of January, we took a 2 week break from FT because we felt like it was more or less teasing her. Hey, Raya, let's go in the room where you've never done anything but eat and hang out with your feeding therapist but NOT eat! Yeah, didn't sound like a good idea. So we took a 2 week break and then Raya started asking when she could go see Ms. H again so we started going again. At that point, I knew we wouldn't be doing food again anytime in the near future because of all the reasons why we had taken her off of food combined with all the things that need to be done before we can start her back on food again but I was pretty sure her FT didn't quite understand that.  

Anyway, when we walked into therapy a couple of weeks ago, I was feeling guilty and a bit awkward about going to therapy just for Raya to take some sips of vanilla Elecare or chocolate Neocate and play games on Ms. H's iPad. I asked her how she wanted to proceed since I had talked to GI and confirmed that solid food is nowhere in sight at this point. I have to admit that even though I feel kind of silly doing feeding therapy with no actual "feeding" involved, I was relieved when she said that she definitely wants to keep Raya on her schedule. The question was how to proceed knowing that there won't be any food added for an indefinite amount of time.

We decided that now that Raya's actually interested of her own accord in drinking chocolate Neocate, it's totally appropriate to work on getting her to drink a certain amount of it within a given time frame. In the past, I've never felt like it was right to push formula on her. She was not interested, simple as that. Before the "no food" policy went into effect, getting her to eat food was the priority. Now that food is out of the picture for the time being and she's not anti-beverage anymore, it's time to go for it.

The other times that I've brought formula for her to drink, it's only been 2 or 3 ounces. This time I was way behind on her feeding schedule so I took a gamble and did a 2 ounce gravity bolus right before we left for therapy. Thankfully it didn't result in vomiting but she did tell me that I made her tummy hurt and held a puke bag while we drove to therapy. Lesson learned, won't try that again. She had OT first and wore herself out pretty good. She had a great morning (probably due to the fact that I was way behind and hadn't fed her) so she was VERY happy to go to therapy. 

When she finishes with OT, she pretty much runs to the feeding therapy room. We almost always have to remind her to get back down out of the chair and wash her hands. She's just too excited to get in the chair & get going. I just happened to have mixed up 5 ounces instead of 3, so we decided to see if we could get her to drink all of it within the hour.

At first, she did great. She downed the first 2 or 3 ounces pretty well within about 15 minutes. The more she drank, the smaller her sips got. She was still taking the 2 or 3 sips we were requiring of her in between turns on the iPad game she was playing with Kaida, but they got smaller and smaller every time. The other thing I noticed was that she got more and more squirrely and restless as she drank the formula. The more that went into her stomach, the more wiggly she got. It was a classic illustration of how her gut is tied into her sensory issues. Instead of what you would expect to see from a kid whose stomach is getting uncomfortably full, she got really wiggly, seemed hyper, was less focused, and really just seemed like she was being rowdy. I didn't put it all together until later but once I realized why she was acting like she had been, I felt bad for pushing her. Instead of getting 250ml at a steady rate over 2 hours' time, she had gotten 60ml as a gravity bolus and then about 90 minutes later, she got another 150ml in about 25 minutes. At least we've confirmed that there's a reason she's getting 2 hour long feeds now.

For the time being, our new goal with feeding therapy is for Raya to drink the whole amount of formula that's given to her (3 oz for now) within a reasonable amount of time without getting down and running around in between every other sip. That's pretty easy at therapy, but it gives us a good challenge to work on at home. 

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