Hi it’s Alexis. This week was an important one. I headed back to the University of the Maryland Medical Center for my endoscopy. This procedure is going to answer a lot of questions. Do I have refractory celiac
disease? Has my body healed from being glutened? Will I have to stay on the fresh food diet for the rest of my life, or will I slowly be able to get back on gluten-free processed foods?
I arrived in Baltimore, MD, this past Monday afternoon. After checking into our hotel, my parents and I headed to the University of Maryland to receive my “Hero of the Month” award. As I walked into the hospital, my heart started to pound and I got so nervous. My mom looked at me and said “Remember we are here for something positive today.” She was right. Not only was I going to receive an award for my bravery and courage during my hospitalization, but I also had two big shopping bags filled with new toys to donate to the sick children in the hospital. I wanted to be that person who can put a smile on a child’s face during a tough time in their life. Those presents I got always put a smile on my face!
We took the elevator up to the fifth floor, the place that was my home for two weeks back in February. We were greeted by the security guard who remembered us right away. I think he remembered us because my dad would always buy him cookies from the cookie stand in the lobby. We were then greeted by Renee from Child Life. Renee was my cheerleader during my hospitalization. She ran the activities at night for us kids and always encouraged me to get out of bed and join in the fun.
Renee presented my award in front of the Child Life staff. I got a $100 gift card to Walmart, a Hero t-shirt, a certificate and a medal. It was such a huge honor. The best part was that some of nurses came by to see me. They were all excited to see how much better I looked since they last saw me. It was great to see them and most importantly, I got to thank them again for taking such good care of me when I was sick.
The next day was my endoscopy. The nurses asked me if I wanted to take “silly” juice before they brought me in the procedure room. This way I wouldn’t care when they needed to put an IV in me. Being that I spent most of the winter with an IV, I wasn’t scared to have one put in so opted not to take the silly juice. When it was time for the endoscopy, I hugged my parents and got wheeled away into the procedure room. After my IV was put in, I don’t remember anything.
When I woke up, my parents were right by my side. They explained to me from what the doctor saw: my digestive tract looked normal. This is good news! However, we still need to wait for the biopsies to come back because sometimes they tell a different story. We have to wait about 2 weeks for the results.
The doctor also said that if I don’t have refractory celiac disease, that means I’m severely celiac. What does that mean? Well, according to my doctor it means that celiacs who are so severe sometimes can’t even eat gluten-free processed foods because they might have a minuscule amount of gluten in it and their bodies can’t handle that. So I’m not quite sure if I will ever be able to get off this fresh food diet and eat my favorite things again. Right now it’s all a waiting game. Until then, I will just dream about eating M&Ms, my favorite gluten-free pizza and Cocoa Pebbles.
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