People have asked how things are going as we prepare. Good!! It is challenging packing for all of us for the week and bringing food items too. Our hotel will have a kitchenette, so that should help. But, I am not sure what stores are in the area, so we need to make sure to have things for Andy while we are there. Brian assured me he (and the rest of us) will not starve, so I am chilling out a little on that front (only a little, though!).
Also, several people have asked what will happen when we go for our visit, so here is a run-down (as I understand it at least!).
Monday - We visit with the GI team and we talk about what has been going on. They will do an upper GI scope (this will be his third!) and later that day a bone scan. I really do not love the part about putting him out, but we assume they will do biopsies again and gather new data since he has been back on the medicine for enough time that it should show a difference. The bone scan is to get baseline data because his medication is a swallowed steroid and they want to see where he is at. This should not be painful, but I am a little anxious about how long he will have to stay still. His is very active little guy!
Tuesday - We visit the allergist and they will apply the REAL patch testing. This will be slightly (ha ha ha) more controlled than our kitchen testing at home. He will have several large stickers on his back with food under them. I think there are 30 things they test for. He will have it on his back for 48 hours (at least).
Wednesday and Thursday - We meet with other members of the team and also have the follow-up with the GI doc once the biopsy results are in.
Friday - Is the "big" day in my mind. They will "read" the allergy test and then we will meet with the dietician/nutritionist about what his diet restrictions will be.
Crossing our fingers for some ANSWERS very soon :)
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