Monday, March 26, 2012

Sadie's Feeding Therapy

It seems like since we got the swallow test report, feeding therapy has been a little sketchy.  It sucks because I feed Sadie all day and she does great, but one stupid test, with someone else feeding her, in an unfamiliar environment, and now our feeding therapist is nervous.  I understand that, she doesn't want to be responsible for hurting Sadie.  But it's also frustrating, because I don't think that test was accurate.

Sadie getting her teeth brushed by Kim for feeding therapy

Today we talked about different approaches and what could have made that test so inaccurate.

1. Sadie does so much better if we stimulate her mouth first with her toothbrush, a Nuk toy, a little vibrator, etc.  Nobody did that for the test

2. Sadie doesn't eat well first thing in the morning.  The test was the first thing she had in her mouth or tummy since the night before.  (Next time, I'm gonna stick to our regular schedule instead of "starving" her before the test...if you want her to eat normally, why would you change everything and still expect her to do so???)

3. Someone she doesn't know was feeding her.  Kim, our feeding therapist, said she will cancel other therapies if she has to to be there this time.

4. She was eating something she'd never had before.  Granted, they make it "taste good"...but Sadie's no dummy, she knew it was unfamiliar.  Next time the barium should be mixed into something we have given Sadie before and we know she likes.

5. It was an unfamiliar environment.  I don't think there's anything we can do about this, except try to make everything else as familiar as possible so as to minimize that she's got a big machine next to her.  I think her surroundings were distracting and she forgot to concentrate on her swallowing.

Sadie LIKES to eat.  And she does really well with it.  Lately she's been eating twice as much as she usually does in one sitting!!  We're hardly making her any tube food at all (plus it still makes me want to yak just thinking about it!).  And when she eats by mouth we see less reflux, we see more poop, she tells us when she's done or if she wants more, and she gets practice!!

Sadie eating some yummy food in therapy
So, we continue with feeding therapy, and I think I'm going to ask Dr. Wendy to recommend us for another swallow test in 3 months, instead of waiting a year.  I think we did it all wrong and Sadie deserves a second chance.  But at the same time, I also think that those tests don't really mean a lot.  Like Kim said, "they give us a snapshot of time...we know that Sadie eats this way at that time of day in that environment.  That's not conclusive of her eating/swallowing abilities."

In the meantime, we continue at home as if the test never happened, and we wait for another one...

Any other advice for making Sadie's next swallow study more successful???

Here's a cute video of Kim brushing Sadie's teeth!

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