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No More Steroids

Hi, it’s Alexis. This week is the end of me taking the steroid medicine. As much as I’m excited about not taking this pill, I am also nervous. I now go 2 weeks off the steroids, giving my body time to react in any way it wants.

After the 2 weeks are over, I have to go for blood work to test my celiac panels. And then, I head down to University of Maryland Hospital in the beginning of June for an endoscopy.  

Even though this will be my 4th endoscopy, I still get nervous. Not nervous that it’s going to hurt, but nervous about what they are going to find. This will be my final diagnosis on whether or not I have refractory celiac disease. 

I often ask my mom, “Do you think I will ever get to eat pizza again? Cake? Bread?” I miss all those delicious foods.

This endoscopy is going to answer a lot of my questions. When the doctor does my endoscopy, he will be able to tell me if my villi are standing up nice and strong again or if they are still splitting. It will give us some sort of idea on how my body is healing or not with all the medications I’m on and my special fresh food diet. Mid- June is when the biopsy results will come back, and Dr. Fasano told my parents if it’s bad news they will have to go down to Maryland and meet with him face-to-face. If it’s good news, he will talk to them over the phone.  I’m praying we get some good news. I have been through enough. 

On a positive note, my mom received an email the other day from one of the women who works for Child Life at the University of Maryland Hospital. Renee runs the Child Life on the floor I was living on in the hospital. Every day she ran a different event for us kids. One night we played Bingo and won amazing prizes like board games, arts n’ crafts kits, etc. Another night I made with the Child Life staff a jewelry box. It was nice that each day they had some sort of activity for us kids to come out of rooms and do something. No matter how sick I was feeling, I made sure I went out and participated because I knew it was good for me to get out my room and feel like a kid.

Over my 2 week hospital stay, Renee and I would talk a lot. I told her about my love for dance, about my little brother and how I lived 3 hours away and so I don’t get many visitors. During my hospital stay, Renee approached my mom and told her she wanted to nominate me for Hero of the Month. She said she was impressed with my strength, courage and bravery through this ordeal, and that no matter what I always managed a smile. Hero of the Month is an award given to one child per month for showing bravery during difficult times. The email my mom received the other day said that I am being awarded Hero of the Month! It is a huge honor and when I go down to Maryland for my endoscopy in June, I will be presented my award. 

After all I have been through, it’s nice to have something positive happen instead of a negative.  I hope and pray more and more positives will continue and that the worst is over.

-Alexis

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