Swallow Study

We had Elli's swallow study and oral motor evaluation at Mary Free Bed in Grand Rapids today. The study went well overall - considering that a) we had both gotten up in the wee hours of the morning yesterday to fly home from Florida, b) she is always cranky after spending a day traveling, c) we made her eat stuff with mushy barium in it, and d) it was a strange unfamiliar environment, she was relatively cooperative. They had me feed her the following things - YoBaby yogurt with barium mixed in, a barium cookie (which she really liked), pediasure with barium mixed in, and my peanut butter balls with barium mixed in. (They were actually quite impressed with the idea of the peanut butter balls and said that's a great thing to feed her since they contain lots of protein and high calories!)

There was no earth-shattering news - they said she has low muscle tone, which wasn't a big surprise - we've suspected that for some time. They said that low muscle tone kids have the exact same feeding problems we've been having - and everything they saw today at the swallow study was common with low tone kiddos. Sooo...at least there's an official label for it now. Thankfully, she has a mild case of low muscle tone, and mild cases apparently tend to improve over time...especially if they receive proper nutrition. :-) They asked if it always takes this long for her to chew and swallow every bite of food, and I told them it was. They also noticed that she tends to chew everything with her front teeth - food rarely makes it to the back of her mouth unless it's ground down to the consistency of drool, which is why she doesn't swallow any foods that are hard to grind down. They also noticed that she tends to squirrel food in her mouth for long periods of time, and that she stuffs her mouth full of food. Apparently all of these things are common for low tone kids.

The main results of this information are as follows: 1) She wants me to stop trying to feed Elli anything she has trouble with, for now. Instead, try to up the volumes of stuff she has no problem eating and work on the calorie deficiency first. Once we fix the calorie intake, we can work harder on getting her to swallow the other kinds of foods. I told her I've struggled to find the correct balance for that - knowing that she desperately needs the calories, but also knowing that she'll never learn to eat these other foods unless she practices! (After all, if I'd always stuck with foods she could easily swallow, she still wouldn't be eating anything...) But for now, this makes sense. She said to stick with thin purees, meltable solids, and soft solids, and stay away from baby food since that's so low calorie. Of course, Elli won't eat most soft solids, so that limits me severely. They gave me a few more ideas of foods to try that fit into these categories, so we'll see what happens with those.

2) We're going to go to outpatient therapy at Mary Free Bed 2x per week for 13 weeks and see if they can help us make more progress. The positive thing is that they have nutritionists on staff and a medical team on staff that can do weekly weigh-ins to make sure that we're getting the right number of calories into her.

3) We need to decrease the breastmilk consumption. No arguments there, and they said they will help me do that without allowing her to get sick or lose weight or something. They gave me a few ideas on how to start that process gradually, which were things I found helpful.

4) She said we should go ahead with the intensive feeding clinic evaluation that is scheduled for 2 weeks from today. However, she said that Elli isn't ready for the intensive feeding clinic - her muscle weakness and swallowing issues will prevent her from getting in. And she said that they will require her to complete at least one 13-week therapy cycle before letting her in anyway, so we might as well do this. Which I'm fine with - while I'm not crazy about driving to GR 2x a week, I'm even less crazy about going 5-7 days a week for 8 hours a day! So, if this will work and allow us to avoid the feeding clinic, I'm in. Besides, my car can almost drive to GR by itself, and it will give me an opportunity to see friends some (I hope), so it's all good. Of course, trying to fit yet 2 more therapy sessions into our week will be an adventure, but if it helps her learn to eat, it'll be worth it!

5) They also said that it looked like our new insurance company will cover the feeding therapy with no problem. Yippee!

So overall it was positive, I think. As Doug said, it's nice to at least have a plan in place, instead of doing the same thing over and over and expecting a different result.