What to expect in Ohio?

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 :)

Off to OHIO

We are so excited to say that we are going to Ohio! (Don't take it personally, Ohio, but I never thought I'd say that!) After the scope in January, it was again confirmed that Andy has eosinophilic esophagitis. He is on the Flovent inhaler again, and life is good---he eats like a champ, sleeps like a rock and has a TON of energy. It is wonderful to see and sad to think about how different he is when he is feeling badly. We got all of our paperwork submitted and he was approved for the EE center there. We were hoping for a trip during spring break, but they were full. Even better, they have an opening sooner!! We can hardly wait!!!

So, why Cincinatti, you may wonder? There are 3 main centers for research for EE in the US: Denver, Philadelphia and Cincinatti. I spoke with each of the centers and felt that Cincinatti would be a good fit. Brian's parents are able to join us and will help with Kate while we are at the hospital with Andy, so we are truly thankful for that!

We will be there for a full week. They will do several tests including another scope, a bone scan (to get a baseline for the impact of the Flovent-steroid- he takes for this) and REAL patch allergy testing. We hope to finish the week with ANSWERS!!!

Thank you for all your thoughts and prayers--keep them coming and I will update soon after our trip! Cincinatti, here we come!!!