Dr. Pentiuk spoke with Dr. Kaul - the motility specialist here. As expected, they want Will to have manometry testing done. However, before this is done, they want him to have a repeat MRI of his head and neck to check for changes since his last brain MRI in fall 2007. This scares the beejeebees out of me, but I know it must be done and makes sense given the swallowing changes. The fact that we are also facing a sleep study (so there are major sleep issues present) and he has fluctuating behavior changes, this would make sense to rule out. I think it is alarming to everyone that his swallow study could be normal 2 years ago and then so grossly abnormal now.
So we wait some more for these tests to be scheduled and pray that they find the answers and yet don't find anything too devastating.
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2 comments:
We'll keep praying for you all. I hope they're scheduling soon, so you won't have it hanging over your head too long. I think that's got to be the worst. We're thinking of you. Shan
I'll keep you in my prayers too. So scary.
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