When your child is diagnosed with an incurable disease your
heart breaks and the world as you knew it stops! We have just lived through four months with
Tessa that I would never want to repeat – but we learned tons and felt our
Savior’s love.
We came back from Cincinnati the first week of March thinking
Tessa had Myositis, from the flu, and she would be getting better. She didn’t get better. On March 21st she was admitted for
three days to the Shanghai United Family Hospital. The next week she had an EMG at the Children's
Hospital of Fudan. March 29th Emma,
Tessa and I left for a week to a hospital in Singapore, where Tessa was diagnosed
with Juvenile Dermatomyositis (JDM) – an autoimmune disease that affects her muscles
and skin. She was started on steroids (prednisolone). They did a heavy dose for three days. Then a month later Tessa and I went back to
Singapore for the second round. She is a
champ with all the pokes, shots and medicine!
Every day she takes medicine morning and night: prednisolone, zantac,
methotrexate, folic acid, calcium, vitamin D and a growth hormone shot. She is back at school now and doing so much
better! We are grateful for doctors,
nurses, prayers, mercy, medicine, physical therapists, the Atonement, friends,
and family.
Things we want to remember from this experience:
- We were so touched every time we would get an email or a phone call from family and friends saying that they were praying for Tessa. THANK YOU!
- Tiffany Allred had Tessa over a few evenings to wash their dog and make brownies.
- Allison and Preston Wilde came to visit Tessa at Shanghai United with balloons and games.
- Monday night, March 26th, the night before Tessa’s EMG Suzanne Calton brought over five bunnies that we could borrow for FHE. She did it in hopes that Tessa would smile and be motivated to move – it worked! She also brought over a new skirt and hair bow.
- John took off work and came with Tessa and me for the EMG. This local Chinese hospital felt like a crowded train station. The technician was skilled but the surroundings uncomfortable. I was so glad that John was with us since no one spoke English. Imagine the looks we got carrying in our blonde curly haired daughter. At Tessa’s ongoing request, he sang "I am a Child of God" for the entire 45 minute procedure. Parts of the test were very painful. When it was over Tessa looked up at John and said, "Thanks dad. I am glad you came."
- The Johnsons offered to have Eliza spend the weekend with them when John and James were in Beijing with my parents, and Emma, Tessa and I were in Singapore.
- Meals came from the Pours, Allreds, Sloans and Gustafsons. The Johnsons had John and the kids over for dinner.
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When we arrived in Singapore Tessa was completely bed ridden. She was in a stroller, wheel chair or we were carrying her. She could not walk, roll over or sit up on her own. Her back and neck were also in a lot of pain. She had rashes behind her ears that we're oozing, and itchy and painful with the creams we had to put on. She had had red rashes on her chest and back. She has bed sores on her bottom. The MRI showed severe inflammation in her arms and legs.
- Emma was such a great help to me in Singapore. She would make us laugh with her English accent. (Tessa called it an English accident.) She would play with Tessa in the hospital while I went to get food (the hospital food was barely edible). I enjoyed going to see the movie “the Hunger Games” with her. And the three of us were able to do a “Jail Break” and go see “the Lorax.”
- Pamela Pour had her friend in Singapore bring Tessa a bag of toys and coloring books. Bryant Eggett was in Singapore with work and stopped by with a huge bag of fun groceries!
- I found a new friend online, Julie Shevlin, who has a daughter named Tessa with JDM. We have exchanged emails and talked on the phone a few times. Her advice and experience has been so helpful.
- During our first trip to Singapore two of my best Shanghai friends were facing their own trials. Elizabeth Eggett was in a car accident and home bound for a month. Jane Farnsworth found out she was suddenly moving to Thailand. It was hard that we couldn’t physically be there to support one another like we usually do.
- Becky Nicol brought Tessa a jewelry box with stickers that Tessa loved playing with.
- For two months Tessa would wake up in the middle of the night. Eliza was a great roommate and would comfort her, help her go to the bathroom, or come up and get us.
- A friend who takes my Zumba class told me that she has a friend here, Christina, who is a physical therapist. I called her and she agreed to come to our house three times a week. Christina has become such a great friend to Tessa and has worked miracles!
I could go on for several
pages….
