Saturday, December 5, 2009

Bring On the Good Times!

Robby is very excited about Christmas. He loves the lights on the houses, the tree, even the Advent calendar. His enthusiasm is contagious and I'm in a great mood lately. Today was a great day for other reasons. I captained a team for our local Jingle Bell Run in honor of Robby and today was race day. I am proud to say we brought together 15 team members and raised over $700 for the Arthritis Foundation of Central Ohio. That seems huge to me for my first time doing this, especially considering the economic times and time of year. Many of the group met up with us for the race and it was a really good time. I put together a cute outfit to run in and made matching scarves for Robby and I to wear. All week he kept talking excitedly about crossing the finish line and he was smiling and cheering when we went through the big inflated arch. Afterward, many of our family and friends that participated came back to the house and we grilled hot dogs and had baked potatoes and hot cocoa. It was a great group of people with lots of little kids playing together. I felt so happy to have all of those people supporting us and the Foundation. It felt really good to know people care about what we're going through.

Robby is doing so well! We started a taper on the Prednisone about a week ago and I'm expecting further taper when we see Dr. H. on Wednesday. I'll be curious to see what she says about his liver when she examines him and also to see what the labs look like. He seems so healthy right now and it's really encouraging. He has color in his face and lots more energy. It's like I'm having to learn how to parent a toddler all over again because he definitely did not have normal energy levels before. He also is showing a lot of improvement in his mobility in his knees. He can walk up and down stairs holding the handrail (had to scoot down on his bottom before), he can step up and down off of curbs without even thinking about it (before he would stop and really have to concentrate and go slowly), he's asking to be carried less, and he's running and doing more physical play. Also, when I feel his knees most of the swelling is gone. I can actually feel the bones of his knee joints again. Before it was all so swollen and puffy that you really couldn't feel the joint. He seems so much happier and it's great to see him more "normal." Hopefully the Prednisone will get all of the inflammation under control and then the Kineret will be enough to keep things in check going forward. I don't want him to have to be on steroids, but I am thankful for the success we are seeing.

I was looking at some pictures from last Christmas and it felt really weird. I was realizing it was one of the last times I took pictures of him before he got sick. I found myself staring at them and wondering if he was already in some kind of pain or was there something I should have seen? A few days after Christmas we went to visit my dad and step-mom and I can see in those pictures that he looks kind of sweaty the whole time. I remember thinking at the time he was probably coming down with something. He was better for about a week and then we went looking at houses just a few days into the new year. We went through about ten houses that day and by the time we got to the last one I knew we needed to take him home. He was flushed, felt feverish, and was just kind of listless and whiny the way little kids get when they don't feel well. Within days the first bumps of the JRA rash would appear and I would have him in an urgent care center thinking maybe it was chicken pox or measles or something. I had no idea at the time what was about to happen to us, to him. I can't believe it hasn't even been a year. I would officially call it the longest year of my life. When I look at where we are now, though--I am proud of all of us. We are managing. We are living our lives. We are not letting the disease win. We are fighting JRA and for now we are winning. And for now is really all I can ask for.

1 comment:

  1. I just wanted to say Hello, I found your blog through Stacey and noticed you were also A JRA mom, as am I. I have not looked through your blog yet but I will as soon as I get a chance. My daughter was diagnosed at 18 months but like you, we can remember back to when she was 14 months and not feeling well. We think she probably had Jra then as well. Also congrats on the Jingle Bell Walk, that is so awesome, I wish we had something like that here where we live. I am HOPING to organize one here in the future!

    I am glad Robby is feeling better.. I hope you all have a Merry Christmas!!