Wednesday, August 31, 2011

Catching up: quick update and some test results

Emily completed her first full week of school and therapy (last week). She did great. She was absolutely exhausted on the days we went to Children's for therapy. They really work her hard! She has done well with her new class. Once again, she is the only girl. I was really hoping she would have at least one girl in her class, but that didn't happen. Oh well. All in all, the school/therapy schedule has gone well. She has her afternoons off, so that gives her time to recover before the next day starts and she has to work hard again.

Remember this post? We had Emily's ECHO a few weeks ago and it went well. She did not have to be sedated for the test. YAY! She was a little bit squirmy, but the tech didn't seem to mind. I brought some toys to keep her as distracted as possible, but trying to keep a 3 year old completely still for an hour is tricky. The doctor called to tell us that everything looked as expected. That is a good thing. So we will continue to follow up with cardiology once a year.

We also had Emily's swallow study that I mentioned in this post. The test itself was very awkward. Emily normally eats in a Tumble Forms chair on the floor. They had a Tumble Forms chair for her to use, but it was about 4 feet off the ground and had no straps. Not good for a kid with poor trunk strength and head control! They were able to get some straps that worked pretty well. Emily was placed between a camera/x-ray machine and a wall. There were 2 therapists and one x-ray tech with us. I was told to bring something she does well with and something she struggles with. So I brought some of her baby food mixed with oatmeal and I brought Gatorade. During the test they also had some applesauce (I think it was Stage 1 babyfood so pretty thin).

They mixed barium into her food and then I had to feed it to her. This was pretty challenging! She was up high, so I couldn't quite get the spoon into her mouth at the usual angle. She also kept getting startled every time the machine would move or click. When she startles or arms go straight out to the sides, so she kept getting them stuck under the machine. Plus her head kept coming forward, because she was more upright than she normally is. When I would move her head back up, I had to get out of the way quickly so I wouldn't block the camera/x-ray. I was thankful that the test didn't last for a really long time, because I wasn't sure how long I could continue to try to do 4 things at once with a bowl in one hand and a spoon in the other. Emily did great though (other than the fact that she kept getting startled).

The result of the test was what I expected it to be. The therapists are concerned about silent aspiration when she is given a thin liquid. The liquid seems to rush to the back of her mouth before she is ready for it. She did well with the thicker food I brought from home. She did not show any signs of aspirating with that texture, but does have a delayed swallow and tends to let food pool in her mouth. Both of those things could lead to aspiration, so we definitely need to work on that. She also tends to push her tongue forward, pushing the food out of her mouth instead of moving her tongue to the back of her throat to swallow. When she did swallow, everything looked good. So that is good. The GI doc wants us to work with the therapists at Children's to fine tune some of her eating skills. If that doesn't seem to work, then he will refer us to the feeding team where we can get some more intensive therapy.

I agree with his assessment, but feel a bit frustrated. I have been struggling with Emily's feeding for a while. I really want it to go smoother and be less exhausting (for her and me). I feel like I have been asking for help from the therapists at Children's and just not getting it. I love the therapy program and cannot imagine Emily doing anything else. The issue is, I don't feel like I have a lot of time to talk to the therapists about my concerns. And when I do talk to them, I don't feel like I am getting anywhere. They tell me things that they will work on as part of the program, but they aren't really giving me advice that I can use at home. I am just going to keep on trying and hopefully we can make some progress in this area.

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