Recently the Bear asked if she could not wear her CGM anymore. [insert heart breaking noise here] I told her that if she wanted to she could take a break for a little while but that wearing the CGM helps us stay healthy. When her sensor quit she was still saying she wanted to take a break, but I was putting on a new sensor myself that day and (to my surprise) the Bear changed her mind and we put on a new sensor and started it up. This morning, that sensor fell off and there wasn’t time to put a new one on and get it calibrated before school so she went without one. Tonight when I got out a sensor she asked again to “take a break.”
This is uncharted territory for us. When she didn’t want an insulin shot or doesn’t want to wear her pump, there is no negotiation. When she doesn’t want to test her bg, still no real choice. The CGM is a little different though. It’s a great tool in managing her diabetes and as the person who manages her diabetes I’m not ready to let her decide not to use this particular tool. However, I also know firsthand what it is like to wear these invasive devices and how nice it can be to get a break. She has so little “real estate” for pump and sensor sites – even being careful about rotation we can see the evidence of past locations. Over the weekend, one of those past locations (pump site) got a little swollen and red, painful to the touch and the pediatrician called cellulitis today and we left with topical & oral antibiotics.
So, I said OK to a break from the CGM. At the end of the week I will need her to put on a sensor to get us through a change in our routines but the next few days are “normal.” We haven’t done dance class without the CGM graph, but also haven’t needed to pull her out because of a CGM low. Mostly having the CGM overnight hasn’t gotten me any more sleep anyway so that won’t change.
I’m more curious about how difficult it will be to get her to put another sensor on – or if knowing a break is possible might actually make it less onerous for her. Will she try to negotiate breaks from other diabetes tasks? Will she see the CGM as less important because I let her take a break?
I’m sitting next to the bookcase that holds all my helpful diabetes books like Kids First Diabetes Second, Diabetes Through the Looking Glass (seeing diabetes from your child’s perspective), and Balancing Diabetes — And I have learned so much from the DOC with stories of growing up with T1 and parenting T1s today — but there are no easy answers. I don’t know if letting the Bear take this CGM break was the “best” decision but it felt right at the time. Now I need to go test her bg and without any arrows, make the best decision I can for what to do next. And, tomorrow morning her sleeve won’t get caught on the sensor and her skin won’t itch from that adhesive and she’ll only have one medical device attached. I wish I could give her more freedom than that, but it’s something.