It's been a long time since my last post and a virtual miracle has happened. Miss E is doing better than ever and is in clinical remission: the 'R' word. Amazing.
I have started to write a post a few times since we got the news, but couldn't finish because saying those words out loud is scary. Writing them and publishing them is even scarier. Not that clinical remission is scary, because it's phenomenal and what we have been striving for since 2007! Saying the 'R' word is scary...what if I jinx it???
It's been a few months since we heard those words and stretched infusions out to only once a month. All is going well, so I guess I can say it out loud now. I remain on high alert for symptoms that may indicate active disease, and I doubt that will ever stop. Nearly 9 of her 10 years have been dominated by this debilitating disease and it can rear its ugly head at any time. For now though, we are embracing this most welcome change and Miss E is making the most of it. She is a very active girl who loves running, gymnastics, volleyball, and now cheer.
It is incredibly difficult to let her participate in so many activities that two years ago would have been impossible for her to do without significant pain and risk of permanent joint damage. It is perfectly normal for kids to have aches and pains, particularly when they play sports, and is hard for this mama to keep from jumping to arthritis as the culprit of each one. BUT - after so many years of being on a constant roller coaster of active disease, I welcome the normal stuff!
I have started to write a post a few times since we got the news, but couldn't finish because saying those words out loud is scary. Writing them and publishing them is even scarier. Not that clinical remission is scary, because it's phenomenal and what we have been striving for since 2007! Saying the 'R' word is scary...what if I jinx it???
It's been a few months since we heard those words and stretched infusions out to only once a month. All is going well, so I guess I can say it out loud now. I remain on high alert for symptoms that may indicate active disease, and I doubt that will ever stop. Nearly 9 of her 10 years have been dominated by this debilitating disease and it can rear its ugly head at any time. For now though, we are embracing this most welcome change and Miss E is making the most of it. She is a very active girl who loves running, gymnastics, volleyball, and now cheer.
It is incredibly difficult to let her participate in so many activities that two years ago would have been impossible for her to do without significant pain and risk of permanent joint damage. It is perfectly normal for kids to have aches and pains, particularly when they play sports, and is hard for this mama to keep from jumping to arthritis as the culprit of each one. BUT - after so many years of being on a constant roller coaster of active disease, I welcome the normal stuff!
