We were just in Cincinnati, OH, for another round of testing for Button Boy at Cincinnati Children’s Hospital. While we were there they had a snow the likes that we had never experienced! The white powder was just that…..powder! It was so powdery that it would not make into snowballs! They just fell apart!
We loved getting to play in the snow! We stayed in Covington, KY, and were right on the river across from Cincinnati. Cincinnati covered in snow was just beautiful!!
We had requested a meeting with Dr. Mark Rothenberg who is the lead researcher on the EoE Flovent Trial that Button Boy has been on the last three months. Dr. Rothenberg was a wealth of information and we were happy to get to meet him and have him meet Button Boy. We felt strongly about him putting a face with Button Boy’s file.
Button Boy’s surgery was on Monday afternoon. He was apprehensive and worried, as usual. He had Spike the rhino (he got him before another surgery at Children’s Birmingham), who is Strong and Courageous, to take with him into the operating room, but he decided that since Spike was from CHS-Birminham that he needed a special stuffed friend from Cincinnati Children’s. We took him down to the gift store and he found Cobbler the kitty and Little the hamster (with a Santa hat) to take with Spike. He was happy with his new friends! Once he got his “joy juice” (Versed) he relaxed tremendously.
Dr. Saeed, Dr. Franciosi, Bridget (she is our contact in the clinical trial), and Angie all came to see us. It was such a blessing to be able to hug Dr. Saeed and tell him how much we miss him! He has been such a great doctor, and we are thrilled to be able to keep in touch with him. We also let Dr. Franciosi and Bridget know that they have been “assimilated” into our family….they are taking care of my baby, and therefore are a part of our family!
After finishing the procedure, Dr.Franciosi met us in a conference room to discuss what he saw. He was very pleased to tell us that Button Boy’s esophagus looked better….much better! He was very careful to tell us that just because it looks better does not mean that the biopsies would reflect that.
The rest of our stay was pretty uneventful…the kiddos were tired of being cooped up in the hotel, but it was 12 degrees outside, and no one wanted to go out in that!
We spent Tuesday night in Nashville, which is where one of my college roommates lives with her dh and cutie pie son! We met them at Rutiers, one of Jimmy Buffet’s top 10 Cheeseburgers in Paradise! It was such a sweet time to get to visit with CJ and AW (another friend from college)…I miss them so much!
I have been blessed beyond belief with a terrific and supportive family (I have been having anxiety attacks when it is time to do any traveling) and friends that are caring and loving through thick and thin!
Oh, we did get the results from Button Boy’s biopsies Thursday evening. The eosiniphil count (which back in August was over 235) was ZERO!! The Flovent has done what we were hoping it would do! Now, we begin the second phase of the trial, we are halving his dosage. We will be returning to Cincinnati in roughly 12 weeks to repeat the EGD and biopsies to see how the lower dosage controls the EoE.