Last week Jackson had some testing done in Milwaukee. He has an appointment in May with a neurologist that specialized in dysautonomia so they wanted to get the testing done before the appointment. He had to be off most of his meds for the test, everything but his seizure meds. It was kind of brutal. At least we know the meds are actually helping him quite a bit.
The testing went well. He had 2 tests done: a tilt table test and a sweat test. The tilt table test was way shorter than they wanted it to be just because he is too floppy to be kept upright for any amount of time, even strapped to a table. They did say they saw a drop in blood pressure anyway, and that his blood pressure was low to begin with. Since I have never been told anything about low BP before I would guess that it could be because he was off his meds. The sweat test was easy. They tested 4 points on each side of his body. On both sides the result was the same: he did not sweat at all except for a little tiny bit on his knees.
I am not sure what any of this will mean for his treatment. We just have to wait for our appointment and see what the doctor says.
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Zoe is doing ok sleeping in her own room. She slept all the way through the night once, so at least we know it is possible. The futon is working out pretty well. We just need to get a baby fence for when she starts moving.
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We had a very nice day on Sunday. The Easter bunny brought baskets for the kids. Then we went for a little walk at the forest preserve. Lee took Jackson off the trail and as usual he loved it. Here are some pictures...
Off roading...look at that face!
Here are Zoe, Dizzy, and me
Here I am with both kids
