Cee is not yet a teenager. She still prefers to have her hair brushed by me rather than brush it herself. But after her most recent birthday, she’s old enough to have to sign a form giving me, her parent and legal guardian, continued access to her medical records. I’ve submitted the form, and we’re […]
Monday is Cee’s next infusion. We have been doing some version of “shelter in place” since March 11th. My kids haven’t really seen anyone or gone anywhere (excepting of course riding around in the car to gawk at things) since then. Cee did go out for her infusion March 23rd. Has it already been a […]
This post contains affiliate links.This is Cee. In this picture from Sunday she’s in her preferred state during this time of shelter-at-home: pjs, bathrobe, and new book. But that’s not how she’s going to look today. Today her hair will be brushed. She’ll probably choose to put on her favorite jeggings and zip up fleece. […]
A little over a week ago, Cee’s left eye swelled up and turned black-and-blue. She didn’t have any trauma, so we attributed it to a bug bite. Sometimes she has a pretty strong reaction to bug bites, so it seemed reasonable. Slowly, slowly over the course of the week it got better until yesterday, when […]
I. Am. Tired. I am tired of people assuming that we are ignorant or ill-informed because we have Cee taking medication. Super medication. I am tired of people assuming that the 30 minute “educational” video produced by their MLM company automatically makes them more knowledgeable than our doctor who has seen 30 years of patients. […]
We’re in this magical wonderland where Cee is feeling well. She has her shots and her infusions and her blood draws and her doctor appointments– but she takes it all in stride. Even with over half her life spent fighting, she’s still able to be happy. Cee is a superhero in every sense of the […]
This post contains affiliate links. If you make a purchase using one of these links, I make a small commission at no cost to you. Wednesday was a seven-poke day. Cee had her monthly infusion at the hospital. I didn’t ask the nurse if she was extremely confident in her IV installation abilities. So she […]
Cee’s rheumatologist advised that she get an MRI every six months in order to monitor the activity in her hips. (In case you missed her last MRI results from this spring, here’s the gist.) l can’t remember if that makes Wednesday her fifth or sixth MRI. David called from the hospital at about the time […]
Last July, Cincinnati Children’s Hospital hosted a SJIA festival. Families traveled from around the country to network and attend educational sessions. Since we had just been there in April, it seemed sort of silly to travel all the way back a few months later, but I was disappointed at the missed opportunity. We have only […]
David and I value loyalty, and whether or not it’s misguided, we feel some loyalty to the pediatric rheumatologist who diagnosed and has been treating Cee. But he’s basically said that there isn’t anything else that he can offer. When I messaged his nurse to say we were looking at our options as […]