It's been about two weeks since we've been able to come off of the steroids. So far Robby hasn't shown any signs of problems at all without them. I'm so hopeful that he'll be able to stay off of them for a long, long time. I have a love hate relationship with Prednisone, I'm actually on a course right now for my ulcerative colitis. It works amazingly well, but it's so awful on your body. I'm grateful that we were able to use it to get his flare under control, I just hope to not need it again.
This past weekend we had a family party for one of my husband's uncles to celebrate his 60th birthday. There was a playground area and tons of kids so Robby was able to run, climb, carry on and just be a three year old boy. He played so hard! I watched him and couldn't help but compare his mobility to where he was back in September. It's amazing to see him now remembering where he was then. He can climb and run with so much more ease. I can see a tiny bit of a bobble around his ankles, but it's something most people probably wouldn't notice. Heck, I probably wouldn't either if I didn't scrutinize every little movement and the appearance of each joint. I don't know when I'll be able to quit doing that. I guess it's partly that I feel it's my job to be hyper-vigilant so I can spot any potential flares before they get too tight a grip on him.
So now we're down to Naproxen twice a day, a multi-vitamin in the morning, and his Kineret injections at bedtime. It seems like almost nothing compared to all the meds we were juggling for a little while. He is doing really well with the injections. Sometimes he protests when he knows that it's time to do it, but once we get him on my husband's lap and it's time, then he straightens up and does it. He typically doesn't even cry anymore. I think the routine we've built around it helps. He knows what to expect each time and he knows that afterward he'll have his ice pack and sticker book to help him feel better. He's so brave for such a little guy!
I've been fixated on really hoping the baby boy I'm carrying is healthy. I wouldn't change Robby for anything, and I've learned how much I can adapt to and live through over this last year and a half or so, but I fully hope this little boy will just be healthy. It would be nice to not have more hospital time, specialists, trips to the pharmacy and all of that. It would be nice to just have things be easy and "normal" for one of my kids. I know I'll love him and take care of him no matter what his needs are, but it would be nice.
