Our food allergist looked at all the food logs I keep on Grace for feeding therapy. He talked with us about her biopsy results and the fact that this disease of EoE is rare and of those that have it she is in the severely diseased category. That is never good to hear. He said because of her eosinophil levels in her esophagus that we are going to take drastic measures. He took all dairy, soy, wheat, eggs, shellfish, fish, tree nuts, peanuts, coconut and beef out of her diet. We are going to go 90 days on this elimination diet and she also is on prednisone, swallowed flovent (in the inhaler) and she is on a pulmocort surry - liquid pulmocort (like you would use in the nebulizer) mixed with maple syrup and swallowed down to coat the esophagus. This medicine does not taste good and she has been very resistant. The good news is that I don't know if it is all the steroids or the foods being eliminated from her diet, BUT PRAISE THE LORD OUR GIRL IS FINALLY EATING!!!!!!! We are so thankful and excited! She is actually asking for food!
Thursday we met with our GI who had talked a lot with our food allergist. She agreed with thing everything and we have decided to start treatment in Dallas and see what our numbers look like when we rescope in 90 days. If we can avoid going to Cincinnati we would prefer that.
Friday we had to be at Cook's for the MRI of her brain and from her hips to her toes. She also had quite a few genetics labs run as well. She was really good before her procedure and I believe that was because so many people were praying for my girl! She really LOVED this chair in the waiting room. Once they took us back we even worked on some school work.
They even had the therapy dog, Chanel, come by to see my little animal lover.
When she woke up from the procedure she was a bear. She pulled off the leads and the pulse ox. I was trying to tell the nurse that she hates any type of tape or Band-Aids because of her sensory issues. The nurse tried to tell me the IV and leads had to stay on for two hours after the procedure. Well she had that IV yanked out and blood squirting all over Daddy within about 3 minutes after that conversation. The nurse told me she didn't realize she was that sensitive about the tape. I told her welcome to the world of sensory processing disorder. Once we had the bleeding stopped she quit crying and sat in the bed and ate two popsicles. All was now well in her little world.
Here she is snuggling with me right before we went home.
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