We're back home with Sean and he seems to be doing a lot better. No major seizures since late Sunday night. But there is a lot that needs to happen over the next couple of months so that we don't keep ending up back in the hospital every 3-4 months.
Sean is going in for an endoscopy (scope of the throat/esophagus/stomach) tomorrow morning at 6am at Loudoun Hospital so we can find out if anything has changed to cause his gagging and reflux to have gotten so much worse recently. On Monday, we're talking to a GI doctor about possibly scheduling Sean to get a GI tube put in. And at the end of this month, we're flying up to Boston to enroll Sean in the low glycemic diet seizure study to see if that will help control his seizures--we've tried just about every medication there is so now it's time to try something different.
Keep checking Sean's CaringBridge journal for updates about all of this from Ann Marie and maybe one of these days we'll just start posting everything in one place.
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