This Is What It's Like....

I've been away too long and have lots to catch up, I know. The thing on my mind today though is trying to capture a little bit of what it's like to parent a kid with JRA. At least my perspective of it which is the only one I can speak to with any authority.

We had a scheduled follow up with Dr. H yesterday. The first thing that needs to be known is these appointments are anything but routine. You go in hoping and that's all you can do. Will the labs be better? How will the exam go? There is this breath-holding waiting for the other shoe to drop that goes into these appointments. The thing is, there are never only two shoes. Oh no, in JRA land there is a limitless supply of shoes waiting to thud and deliver nasty news. In our situation, we've been trying to avoid starting Robby on Prednisone if we could. We did increase the Kinaret dose in mid-October, and labs have shown some marginal improvement, but his SED rate is still 23 and his knees and ankles are still huge and warm to the touch. So it's helping, but not enough. The icing on the cake this time was his liver seemed enlarged upon examination. That told it was time to go down the steroids road. We can't risk letting his liver get too involved and potentially damaged. We drew new labs yesterday to see if his liver enzymes are still ok and I have yet to hear back on those.

The second thing that needs to be known is JRA is relentless. It doesn't care how young or cute your kid is. It doesn't care that you keep all of your appointments and follow the doctor's protocol to the letter. It doesn't care that you are worried about how you will explain to your little boy that he may not be able to play football when he gets big because it's all he talks about. JRA does what it does and that's it. I will say that keeping all of the appointments and sticking to the treatment protocol at least gives your kid a fighting chance. It also will hopefully give you a better shot at sleeping at night knowing you are doing all you can. That is what I had to tell myself this morning. I was feeling like a failure as I gave Robby his first dose of the medication we had been working so hard to avoid. I had to stop and remember that I'm doing all I can and the course of this disease is not within my control.

The newest thing that I am struggling with (aside from excepting the introduction of Prednisone into our protocol) is wondering when he will realize he is different and how we will deal with all of that. If he doesn't achieve remission, there will come a day when he realizes that most kids don't have trouble going up and down the stairs and they don't take shots every day and get labs drawn every couple of weeks. He's going to know he is different and I don't know how that will feel to him or what will come of it. I try everything I can think of right now to give him some sense of sameness. I am taking him to the pool a lot and want to get him in swim lessons after the first of the year so that he can hopefully have a shot at swimming as a sport he can pursue. I think that will help. I'm not sure what else I can do at this point as he's still so young. I just try not to coddle him and try to keep JRA from dictating how we do things anymore than necessary. I hope it will be enough.

And an update that is long overdue: Robby's surgery in September went exceedingly smoothly. There is a great bit of medical mystery around exactly what it is that they removed from his hip. They know it wasn't malignant and they know they got it all out, but they can't definitively tell me what it was yet. I got the pathology report and it's interesting to see them talking about how they discussed his case at their departmental meeting. In the end they sent his specimen off to OSU for further analysis by their pathologists. At this point it's more to solve the science part of it than anything because I'm sleeping really well with the information I have now.