We just returned from our most recent up and back trip to Mayo. They’re more cost and time effective than staying over night, but man – – those up and backs are exhausting. Nothing like sitting for 7 hours to take it out of you.
Cee’s arthritis is quieting down. She’s gotten rid of almost all the swelling and inflammation in her joints. She’s returned to a normal-ish range of motion. She’s happy and busy. Assuming that everything stays quiet, we won’t have to go back to Mayo until August. August! In August we’ll do xrays and discuss tapering off the methotrexate. This is all good news. Cee’s reaction to the methotrexate seems to be intensifying, so it will be great to start decreasing that dose.
We asked about installing(not sure what the right word is…but for sure it’s not “installing”) a port on Cee since she’s a frequent flier with her IVs. The rheumatologist said that it’s not something we need to do now.
One unexpected positive from the appointment is a study in which Cee will be participating. Basically Duke University is creating a registry of 10,000 JIA kids who will be followed for 10 years. Hopefully collecting and sharing data will mean that we are one step closer to a cure. Or at least better, more efficient treatment. Since Cee’s disease is more serious than most cases, her information will be particularly useful according to the doctor. It feels good to be able to do something and potentially have an impact on others dealing with JIA.
We went into the appointment expecting good news, but that didn’t make the visit easier. January is hard. The new year prompts reflection, and reflecting on the past three years hurts. January 2013 is when Cee stopped being able to walk because her hip hurt so badly. One morning, everything changed. January 2015 is when we went from having the arthritis mostly under control to having no control of anything.
There have been so many moments where we didn’t know how we were going to get through. It wasn’t even a matter of taking things one day at a time, we’ve had to focus on getting through one breath at a time. There have been positives as well–adding Moe and Bea to the family, seeing how kind and caring people could be, appreciating little moments. But nonetheless, reflecting is hard. January is hard. Please pray for quiet arthritis and a quiet 2016.