It’s hard to believe that we’ve been on this JA journey for two years now. It doesn’t feel like it’s been two years since our doctor first voiced the words “Juvenile Arthritis.” Crazy how fast time has gone and even crazier all that Monkey has been through since then. Today is a good day to look back and see how far he’s come. (I have many posts on the blog detailing our journey. I’ve linked some posts below if you’d like to go back and read our stories.)
We noticed Monkey was limping in January of 2012 and within a couple of weeks he was in so much pain that he wouldn’t walk. There’s nothing quite as heartbreaking as seeing your 2 year old sit in a chair with tears streaming down his face while he says, “Momma, I hurt. Momma, we go to doctor.” Knowing that you’re trying everything in your power to find what’s going on and yet not being able to ‘fix’ the hurt really weighs on you.
February was full of x-rays and appointments and it was the first time we heard the words “Juvenile Arthritis.” Up until this point in my life I’d never heard of kids having arthritis. I will be completely honest with you and tell you that I was scared. I sat in the van after that orthopedic appointment and cried as silently as I could. All I could see was my sweet baby boy in a few years with deformed hands in pain not being able to do the things that other little boys do. Thankfully my initial fears were wrong…warranted yes, but wrong. It’s normal to be scared and worried…it’s ok to grieve and be sad. If you’re going through these emotions too after a diagnosis please know that it’s ok that you’re feeling this way and you are not alone.
We also had an MRI (not exactly the most fun experience), and our first Rheum appointment. When I look back at all of this it’s still such a blur. Thankfully I was able to get him into his appointments quickly (yup, I’m that mom who calls incessantly asking for cancellations until they fit us in lol) and we were one of the few to get our diagnosis fairly quickly. Over the next few months we tried a variety of medications and finally direct joint injections to relieve the swelling and pain. (You can read more about our start on this journey in my first blog post about JA.)
The injection/drainage seemed to work wonders until his other knee showed swelling a few months later. We tried steroids again and switched to Naproxin. Poor kiddo was now getting an upset belly from all his meds so we added Prevacid to the mix. Unfortunately, the swelling persisted and soon we found ourselves back at Children’s for another outpatient procedure. After this procedure I decided to blog about how our day went. I felt it was so important that other parents have a realistic view of what to expect. For us going in not knowing was intimidating and always a little scary.
This time the effects didn’t last as long and we found ourselves talking about other options. This is when Methotrexate was discussed. If I told you I was happy I’d be lying….I was terrified. Not only at the idea of having to give our now 3 year old a shot at home once a week but also of the possible side effects. After all Methotrexate is a chemo drug. But we knew that the risks were worth it if it meant that Monkey could been pain and inflammation free. Starting him on Methotrexate was not fun but I am so thankful for our amazing doctors who helped make the transition easier and for my awesome husband for being the strong one when I couldn’t. That first injection was an experience I’ll never forget. I am so thankful though that after a few months Monkey was old enough to start taking his medication orally rather than via injection. This was a very welcome change for all of us!
Now here we are, two years later, a year on Methotrexate and things are looking good. (Knock on wood!) I’m cautiously optimistic at this point. Heck, you have to be with this disease. It can rear it’s ugly head at any moment with no warning. You find yourself overanalyzing every bump and hurt. Looking at their little joints wondering if they are swollen. But right now I’ll take comfort in the fact that Monkey is doing well. Sure he has his moments. Sure we deal with the not so fun side effects of his medication like moodiness and cavities. But he’s running…he’s jumping…he’s being a boy. In fact he just ran over to me, wrapped his arms around me and gave me a kiss. That right there is what gives me hope. Hope for his future. Hope that he will be able to run and skip and play like every 4 year old does. Hope that some day other kids with JA will have even better treatment options. Hope that some day Monkey and other JA warriors like him won’t have to live with the pain of JA at all. Hope…