Thursday, April 29, 2010

Keep it up, kid!

Wow! Another month with a SED rate of 1. I don't even know what to think of it at this point. We're down to 1/2 ml of oral Prednisone per day now (plus our Naproxen and Kineret). As an added bonus, I did an experiment and took Robby off of the iron drops he's been taking to see if his iron levels would remain normal without them and they did! Dr. H. agrees we can stay off of the iron drops as long as his iron stays normal. This is a big win because the iron makes him really constipated which I then have to try to treat with Miralax. This way we are cutting two drugs out of the equation.

I think I've finally found something to replace some of that lost feeling I was experiencing when I left my job. I've opened an Etsy store and I'm making items for babies and kids like hats and crocheted stuffed animals. I hope to expand to things for grown-ups too (hats, bags, scarfs) as well as home items and eventually pet stuff. I started out mainly crocheting, but I'm becoming more and more interested in sewing so hopefully I'll be able to expand my skills in that area. It's just a small side venture, and I really don't expect to make a living at it any time soon, but it's giving me something to focus on that's mine and that feels good. I have a little business of my own---a place to put my energies and use my creativity. I've missed that since I started the stay at home gig.

Friday, April 16, 2010

Out of sight, out of mind....

I realized today it has been four months since I've updated this blog. I think what happens is while Robby is doing well I try really hard not to think about JRA aside from dosing meds and keeping rheumy appointments. And he is doing well....really, really well! We are still charging along with SED rates of 1 or 2 each month. His iron levels are back to normal. He looks and acts healthy. Swim lessons are going great. He's all set to start preschool in the early fall. We are seeing the light at the end of the Prednisone tunnel (down to 1 ml and hopefully one more clean lab report will mean we are finished). Everything is great. I hope we can stay here for awhile. It's a nice place to be.

While he's doing well and I don't have to obsess about JRA every day, I think I still need to keep it in my mind. I feel like my job now is to help other parents in my situation. We have the Arthritis Walk coming up on May 2nd. I'm not making a team and fundraising for this one, but my husband and I will both sign up and walk in the event. Lately I've had a somewhat unique opportunity to help another mom who is where I was just over a year ago. I participate in an online forum for parents and have information about Robby's illness in my signature that follows all of my posts to this forum. I got a private message a few weeks ago from a mom with a two year old boy who is going through the diagnosis process right now and she wanted to know if she could ask me some questions. It was nice to be able to share what the process was like to get to Robby's diagnosis and to be able to answer the various questions she had. It sounds like they are dealing with Systemic Onset, but it's too soon yet to say for sure. She's supposed to keep me updated and I look forward to being a tiny part of her support system if it's needed.

It amazes me that there are 300,000 kids in the U.S. with JRA, yet when I tell people that Robby has arthritis they are amazed. I always hear two things: 1) I didn't know kids even got arthritis. 2) How did you know that was what was wrong with him? I usually tell a pretty condensed version of our diagnosis story and that seems to do the trick. I wonder what it will take for people to become aware of what our kids go through every day? I guess it's just a matter of talking about it and keeping it out there.