Today we met with Scarlett’s rheumatologist for a follow-up appointment. She is currently doing well. Right before Christmas Scarlett developed pneumonia after contracting the respiratory virus our other kids had and had to be on antibiotics and steroids. She is currently on the mend. Her latest lab results are good. She had no protein in her urine for the first time and her complement levels remain stable. Our biggest concern at this point is infection. I constantly worry about germs! In early December we were attending Stella’s (our oldest child) Christmas program. I was sitting with Scarlett on my lap and the man next to me coughed directly on us. I almost lost it on a complete stranger. Cover your mouth! My husband and I are planning to bring Scarlett and Stella to Florida with us next month, as I’m attending a conference for work. I’m already having anxiety over whether people on the plane around us will be sick or coughing and making sure we sanitize her seat and tray. Before Scarlett’s lupus diagnosis I never worried about such things. If a piece of our kid’s food fell on the floor at home it was ok, because that helped build their immune system. It is a balance. We want Scarlett to have normal experiences, but I’m apprehensive of what she’s exposed to. Every week she goes to Awana, which is children’s church and as I drop her off I can’t help but linger in the doorway to make sure I don’t hear any of the kids coughing around her. We are planning on putting Scarlett in preschool this fall when she’s four. For now she’s doing well, we are optimistic. Stella’s 8th birthday was today, which made Scarlett even more excited for her own birthday in a few weeks. Scarlett’s 4th birthday will certainly be special.
4 thoughts on “Rheumatology appointment 1/17/19”
Getting real about maintaining as normal a life as possible while struggling to protect your Scarlett is brave and courageous and honest. Stay strong momma and carry on. xoxo
Thanks Lady D. One step at a time.
Stay well Scarlett. You look so grown up.