Well, as you know, he didn't pass his scope, so he didn't get to add a food...but we still decided to keep our reservations and go to Disney anyway. We discussed this decision with Andrew because we would be eating at least 1 meal a day in a restaurant, and he would have to go with us and sit at the table and drink his Splash juice box. This is something we have not done with him since he has been on this elemental diet. He assured us that it was okay, that he just really wanted to ride the rides anyway--"isn't that what Disney is really about?"
So off we went. Well of course things can never be easy. Andrew ended up sick our first day there. I knew he either had a sinus or ear infection. I tried calling our pediatrician, but our primary pediatrician was out for the week and the one that was available would not listen and told me we had to be seen in Disney. Because Andrew is getting ready to start the high dose of steroids and has chronic sinus issues, I felt confident his primary would have called in a prescription, but the doctor in the office would hear nothing of it. So then I had to find out the dose of the antibiotic pill that Andrew takes because he can not take the liquid or chewable because he becomes symptomatic while on them. After that we had to find an Urgent Care in Disney. Believe it or not, Disney does not employ their own physicians. So to make a long story shorter, we spent 2 hours the next morning (the waiting time alone that evening was 3-4 hours) at Urgent Care for the doctor to tell me that my son had an ear infection, and then for me to tell him the exact medicine and dosage my son needed due to his EE. But, since we happened to be there, I had them give him a shot of Rocefin to speed up the process so our whole trip wouldn't be miserable. I do have to say it was interesting because while we were waiting for the shot, the doctor came back in to ask me questions about EE. He said he had never had a patient with the disease before and wanted to learn more. Anyway, it would have to be the child with EE to get sick! He has not been sick once this winter since he began the elemental diet, and boom, go to Disney and right off the bat!
What I was really concerned about in Disney, though, was our meals. My husband and I had decided that we would only eat 1 meal a day in a restaurant. So we packed breakfast foods and sandwich makings. We ate breakfast in the hotel and packed our sandwiches and ate at the parks. As we ate our sandwiches, Andrew drank his Splash juice boxes. But you know, if you have ever been to Disney, it is a total experience. As you walk along in the different parks there are sight and smells that can make your mouth water. They are filled with restaurants and kiosks selling everything from popcorn to ice cream. You can't walk more than 2 feet without seeing someone enthusiastically licking an ice cream cone or devouring a funnel cake. And you know what, a child is supposed to be able to enjoy those little, yet thrilling treats. It breaks my heart at times that my Andrew may never be able to experience those small joys again. But we do have another child, and I do not feel that she should be "punished" because Andrew suffers from this horrible disease. So as deceitful as I felt we were being, my husband and I would split up, one of us taking Madison to get an ice cream, while the other one of us took Andrew to go on a ride. One time, Andrew and I got back too soon and he saw them eating ice cream. He said, "Hey! They have ice cream!" You could hear the disappointment in his voice, but that was all that he said, and he never brought it up again. His strength never ceases to amaze me.
At dinners he showed that same strength. He would drink his juice boxes as we all ate our dinners. We never ordered dessert and he would ask not to sit next to Madison if she ordered pizza. I also allowed him to do something that I thought I would NEVER let a child of mine do at a dinner table (and probably raised many eyebrows)...I let him play his DS while we ate. I just didn't feel it was right to make him sit there and watch us eat his favorite foods. He has been such a trooper through this whole process and if that made it a little easier for him, then I was all for it. The food aspect of the trip went more smoothly than I thought it would. Andrew handled the situation really well, ear infection and all. But I have to say that Madison also tries to make it easier for her brother. She is such a sweet and caring sister. We are so blessed to have these two precious treasures as our children.
---On a food allergy note in Disney: My husband has a poultry allergy. The restaurants in Disney are very accommodating to food allergies. The chef comes out and personally talks with you about your allergy, what you are ordering and how your food will be prepared. He/she also brings a pad to takes notes on. If we ever go back and Andrew is able to eat some food, I will feel very comfortable with him eating in the Disney restaurants.
No comments:
Post a Comment