Tuesday, August 16, 2016

Update: JA and My Super Kid

Emma is amazing.

(I'm sure I've said that before, and I know for a fact that I'll say it again, but I just want to make sure you all know it.)

My freckle-faced Bean is going to start first grade soon. She is also in the process of weaning off of her arthritis medication. Again. (She has auto-immune juvenile arthritis.) Enbrel is her magical drug. It has worked to completely eliminate her inflammation every time we have used it. However, the goal is to not be on this stuff forever. The long-term effects of these meds really aren't known. So, when her disease is under control for a year, we say goodbye to the medication.

The first time we weaned off of meds, she had only eight weeks before her knee blew up like a painful, stiff balloon. The second time, she enjoyed five glorious months before the arthritis crept back into her joints. Once again, she has been in medicated remission for about a year, so once again, we slowly taper off of the Enbrel and check for any re-emerging signs of active arthritis. It will be a gradual process. Currently, I'm still giving her weekly injections, but I am under-dosing her. We'll see her rheumatologist in a few months and plan where to go from there.

I have a little bit of nervousness about this wean, because, you know... SCHOOL. I'm worried that without her magical Enbrel, she will eventually flare, and it will affect her school life.

Do you remember being a kid and running around the playground, loving your first grade teacher, coloring, and reading? Were you just trying to have fun, master the monkey bars, figure out those darn "rule breakers" while reading, and enjoy time with your friends? Wasn't it awesome, singing songs, discovering your skills as a writer, becoming a budding mathematician? Maybe you were different, or you worried you would be thought of as different and then not accepted by other kids. Maybe you had warts all over all of your fingers and you were afraid that kids would notice and then no one would want to be your friend. (Okay, that was me.) Maybe you just wanted to sit in the grass and talk with your friends without being chased by Richard who was trying to kiss all the girls. (Also my experience - those warts came in handy to scare him away after all.)

I want Emma to have all of that without hobbling around in pain. That's all I want.

Enbrel is my security blanket. I really don't mind stabbing my kid in the arm once a week to give her a shot. That's a freaking piece of cake compared to watching her limp every morning when she gets out of bed.

So, even though she is fine, fabulous, and so so healthy right now, and we aren't even off of the medication yet, my mind goes down the road and deep down inside, I worry.

1 comment:

  1. I feel you on the worrying. All we can do is be here for them, though, whatever their trials may be. Right? And each other! Love you, my dear!