Dear Grandma and Grandpa,
I miss you and really wish we lived closer to each other. I love when you send my mommy pictures of the cats that hang around your house. They remind me of all the fun I have when I get to visit you.
I wanted to let you know I had to get tubie this week (tubie is what I call my IVIG infusion). It was my 23rd tubie and it isn’t getting any easier. Mommy sits with me in the hospital bed and holds me tight as I cry and fight to get away. I usually end up all sweaty and tired, but I know deep down the medicine will help my legs run faster and help me from falling down so much. I try to be brave and strong like daddy tells me to be, but it hurts and I don’t like it. I ask mommy when my JDM will go away and when I won’t have to get shots and tubie anymore.
Once tubie is in my arm, I can relax a little bit. We are at the hospital for about six hours for my tubie. Mom always packs our rolling suitcase with things to do. I love getting to go through it and see what’s inside. I especially like that part, because you’ve often sent me a surprise! It is like a reward for getting through tubie and the gift is something I can do while I wait for the medicine to get into my muscles. This time, you sent me some kitty cat socks that I have been wanting for months and an amazing bead kit. I opened up the bead kit immediately and made a bracelet for mommy and one for one of my favorite nurses. Since I’ve been getting tubie for almost two years, I know most of the nurses in the day treatment section of the children’s hospital. I love getting to walk around with my tubie and pass out little gifts to the nurses and staff. It helps me forget that I’m missing school and my friends, and it helps the time go by faster. Did you know there are no windows in my part of the hospital? I get so bored, so I take lots of walks and really look forward to the things you send me. They make me feel special and loved.
I have never met another kid with JDM, I don’t know why I have it or when it will go away. So, the gifts you send make me feel happy even though I don’t want to have JDM.
Thank you for thinking of me and for loving me! I wish we lived closer and you could visit me at tubie or at my house. Mommy said I get to see you on Christmas though! I’m super excited to see you! I’m going to give you a big hug!
I love you! See you soon,
CeCe
