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Shifting Gears

Silly girls who requested "matchy-matchy hair" today

Feeding therapy has been interesting since Raya went back on Neocate and off of food. Feeding therapy. With no food. Aside from the fact that going to feeding therapy is one of Raya's top 5 favorite things to do at this point in life, I've been feeling a little guilty lately for using up a time slot on our therapist's schedule. If Raya still had oral motor delays to work on, then we could work on that. She really doesn't though. Any "delays" she may still have are more inexperience than anything. She needs practice chewing things that require a lot of chewing, but other than that she's pretty good at the mechanics of eating now.
Not to go off on a tangent, but here's a video of her first real drink of water where she actually swallowed some:

Her tongue was floppy and all over the place and my favorite part is when the water squirts back out of her mouth.

So yeah, we've come a long way since then. (except that she still coughs more often than not when she drinks water) I told her feeding therapist about my chat with the GI doctor earlier this week and that yes, it's completely fine for Raya to drink vanilla Elecare even though she's on Neocate. (her therapist had been concerned about that) I also told her that there is no time frame on when we might be able to start reintroducing food but that it likely won't be (at least) until we're able to do a solid food gastric emptying study or some other type of motility study and we have NO idea when that's going to happen.

Without food, we've had to shift gears with feeding therapy. We talked about whether or not we should continue, and decided that we will, if for no other reason than feeding therapy makes Raya happy right now. She loves her therapist and she loves going straight from OT to FT. We agreed that we may not need to use the entire time slot, but that even though we're not able to work with her on her previous goals of expanding her food choices and increasing the quantity she eats at a meal, there are still other things we can work on. We went over what we DO have to work with, which basically entails elemental liquids (i.e. flavored Elecare, Neocate, and Splash) and pseudo-solids like the Elecare "pudding" that Raya has pretty much lost interest in since she's been sick this week. When she first started drinking the vanilla Elecare, she would only drink it out of the plastic scoop that came in a container of protein powder. Now that she's been drinking it for a while, she will take it from either a bottle with no lid on it, or an open cup. Either way, that's progress.

We've decided that one thing we can work on is getting her to drink a good quantity in a more reasonable amount of time. Currently, I'll mix up 3 ounces for her and she takes a couple of sips at a time. It can take her an hour or two to actually finish the 3 ounces. Today at feeding therapy, we got her to drink 100ml (3 oz plus 2 tsp) in about 15 minutes, which is a HUGE improvement. We also decided that once I get my hands on some chocolate Neocate and Splash, we can work with her on those as well. We (meaning Donny and me) have never felt like it was a good idea to push Raya towards drinking formula because she was not at all interested until the vanilla Elecare came along a couple weeks ago. Now that she's interested though, there's no reason not to encourage her to drink more and to try different flavors.

What I got out of our FT appointment today was that even though we've taken a huge step back from where we had gotten to, there are still things we can work on and she can still make progress with those things. It's easy to lose sight of the fact that although the ultimate goal of feeding therapy may be to have a 100% orally fed child, there is SO much more to it than just that ultimate goal. There are so many other smaller goals, and that ultimate goal of 100% oral eating is just not realistic in the immediate future for us, and I'm okay with that. We'll just keep doing what we can to keep her interested in what she is able to have, and hopefully the medical side of things will catch up.

(PS she also had a FABULOUS session with her OT today. She seems to have turned a corner with the ear infections and is a much calmer and more organized kid today than she has been all week. Whew. knock on wood.)


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