2 years since coming home…

I haven’t posted since February. I must admit that it has been a stressful time with covid, which I’m sure any parent with an immunocompromised child understands. I am really hating covid right now, besides Scarlett being a vulnerable child, myself working in healthcare and taking every precaution possible, it is also delaying her trip to the NIH to see the RALD specialist. Hopefully we will be in touch with him soon. Scarlett’s trip to Washington D.C. to advocate for lupus research was also cancelled because of covid. We were still able to meet with our state’s representatives over the telephone, which were positive discussions and the Lupus Foundation of America is honoring her scholarship and she will be able to attend next year’s summit. Which is great!

I always try to look on the bright side and since Scarlett has been home from school, she has hardly been sick. I added up all the days she missed at school this past year and it was half of her school days due to being sick and one day I kept her home because a classmate was diagnosed with influenza A. In January she had a chest xray and was given antibiotics for pneumonia. In February Scarlett celebrated her 5th birthday, but also had another round of antibiotics for pneumonia. In March, she was given steroids and antibiotics again for pneumonitits. Then covid happened and she had to stay home from school with her sister and she’s been doing well since.

On June 18, 2018 Scarlett was discharged home from the Sanford PICU. She has now made it two years without being readmitted to the hospital. She’s had her setbacks when she’s been sick, but she has not experienced an illness that is life threatening. That in itself is worth celebrating. She keeps defying the odds as most children with her complications have more admissions to the hospital. I will never forget the day she was finally able to come home. She may have had an IV pole next to her bed, but she was so happy to be back in her room. The road to recovery has not been easy. It is a strange coincidence that she had an appointment with her primary rheumatologist today, on the anniversary of her coming home. Scarlett has never had a normal chest xray, and since she is healthy he ordered one today to have a comparison. She also had blood work drawn. Her doctor told me today that he believes she will be able to attend school with her classmates and there was even discussion of lowering the dose of one her medications that suppresses her immune system.

I am so proud of our girl. Not only is she doing well health wise right now, but she has the best attitude. During her chest xray she followed all the radiology tech’s instructions precisely without any complaint. She also had to have a blood draw, which is the hardest for her. Scarlett always gets scared when she has to have her blood taken, especially after everything she’s been through. When Scarlett has to have her blood drawn she sits in my lap with her favorite teddy, which she got in the PICU and I always whisper to her that she is the bravest and strongest girl I know and that she can do it and I put Peppa Pig on my phone to try and distract her. I want to cry with her every time she’s in pain, but I’m so proud of her willingness, and she knows it’s to help keep her healthy. Her lab work already came back this afternoon and her inflammation markers are lowest they have been in a long time, which is the best news!

I am so happy that Scarlett is still doing well overall. The fact that she has made it two years since her discharge without any life threatening complications is amazing and gives me so much hope. When she left the hospital I was told by one of her doctors that if she could go two years without any serious complications it would be a good indicator of her long term survival. Way to go Scarlett! I couldn’t be more proud of you.