Scarlett has been doing well overall since starting preschool this fall. She is currently on a 504 plan at school, there are UV filters on the lights in her classroom, she has a hospital grade air purifier in her room as well, and her teachers are taking extra precautions to avoid germs. Everyone is Scarlett’s life has been doing everything possible to keep her from getting sick. However, this past November she was on steroids again and antibiotics for 20 days to treat an ear infection that wouldn’t go away and pneumonia.
Last week we were in Fargo to see Scarlett’s rheumatologist and pulmonologist. She was still a little sick at that time, but her lab numbers for lupus were good. She has continued to maintain good lab results, which is very encouraging. She is over a year out from her last rituximab so she had more specialized blood work done. Rituximab was a medication she was given in the PICU that helped save her life, but it completely wiped away her immune system. Her recent labs show us that she is still very immunocompromised, but her body is making immune memories, which is a pretty big deal. Her biggest threat at this time is infection.
Scarlett’s lupus is unpredictable, she has days when she doesn’t feel well, which usually means a low grade temperature, joint pain, and complaints of a tummy ache. The days she doesn’t feel well can be discouraging. When she has a flare it usually lasts a couple of days. We constantly worry about her. However, I am really encouraged about her latest blood work, her lupus seems to be under control overall and her kidney function is good. Her pulmonary function is also much improved since staring an inhaler back in August.
I don’t think I’ll ever stop worrying about Scarlett. Her recent blood work has her doctors and myself feeling very encouraged. She just keeps amazing everyone around her with her positive attitude and miraculous recovery. This past week when I asked her what she wanted from Santa. She told me that she already told Santa and God that she wanted all the kids at her hospital (meaning Sanford Children’s) to be able to go home. She has expressed several times now over these last few weeks how she’s worried about the kids in the hospital over Christmas. It’s interesting, since she was diagnosed, she has hardly expressed she is worried about herself. I think she knows she’s going to be ok, even when she is sick like this past November.
Our family wishes everyone a healthy and happy holiday season. We appreciate everyone that has been thinking and praying for Scarlett. Merry Christmas from our family to yours.
My Child Has Lupus 