We've learned that part of moving to Fargo and a whole new set of providers/therapists for James has meant re-doing a lot of things we've already done. One of those is a video swallow study. James has had, I think, 3-4 of these done in the past at Marshfield. The last was probably about a year ago.
What is a video swallow study? Pretty much the idea of it is to make sure that what James is eating is safe for him. Sometimes kids with CP have weak muscles in their mouths and the food/drink goes places that aren't safe and they can end up aspirating and getting pneumonia from it.
So Wednesday morning James I headed to the X-Ray department at Sanford. We got in the fluorscopy room where things were going to happen, and thankfully James didn't freak out. He saw his speech/feeding therapist and he got the biggest grin on his face!! The way they do the study to give him food and fluids that have barium in them and as he eats/drinks they take a video that's like and x-ray and they can watch where in his body the food/drink goes. So they replaced his Pediasure with the barium liquid and added some barium on top of a cracker for him and also got him Stage 2 baby foods with barium in it. We had to move James from his own chair to a Tumble form chair (we used to have one when James was smaller) that sat on top of some chair they use for adults. I was a little nervous that at that point James would get upset, but he was still happy as a clam. Usually around a lot of new people in a hospital environment he gets pretty anxious-I'm so proud of how well he did. They did have me feed to help with that but also because the technique of feeding him is just as important-not that other people can't feed him and it wouldn't be safe. They just wanted to see what "normal" was like for James.
First we gave him the bottle and he did great but wasn't getting a large amount of fluid at a time (expending a lot more calories to get his food). They we tried the baby food. He did great with that as well, he got larger amounts of this with less calories expended-too bad baby food doesn't have a lot of calories in it. Then we tried a saltine cracker which he also did just fine with.
Overall the findings were what I expected-that James is just fine and safe to eat what he usually eats. They suggested maybe trying a faster flow nipple for his bottle and see if he can handle that to help with the amount of calories he burns while taking his Pediasure.
Wednesday also meant therapy for James. He started with speech/language therapy. He did great as always. They are currently working on making choices using eye gaze. They give James two choices and when he looks at one in particular they count to either 3 or 5 and once they hit that number James gets his choice (bubbles or a car or a ball usualy). If he doesn't have a steady eye gaze with either option he doesn't get either one. Next came speech/feeding therapy. Again, he did really well and was a good mood. They are working on some new textures of food like thicker applesauce. Last was Occupational Therapy. Recently I started sending James back by himself (Elliot and I used to go with him) and he does so much better without me!! In OT they are working on moving things from hand to hand and reaching for objects across his body.
We recently decided to stop Physical Therapy. At James' 6-month assessment he had actually decreased in his range-of-motion meaning that what we were doing wasn't really helping him. We'll reassess this decision at our next CTC clinic.
In other news we'll find out on Tuesday how close we are to getting and iPad for James! He uses on at school and I'm told that it is highly motivating for him. He's always loved my iPod Touch. With the iPad we'll be able to use it as a switch (he hits a button and it'll say what we've programmed it to say, or it'll make a specific noise, or when he hits it we'll do something for him etc). We can also use it for communication-there a lot of amazing apps out there for this-the key will be to find one that we can make simple enough for James and one that he'll be able to understand.
All in all....he's busy, he's happy, he's healthy, he's safe. We're happy with that.
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