Monday, June 7, 2010

No More Steroids

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.

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.

Tuesday, January 12, 2010

One is the loveliest number.....

It's so amazing to get a call from the rheumatologist's office that leaves me feeling better than I did before the call. Too often the opposite is true, but yesterday was a Good News Day. For the second month in a row, Robby's SED rate was down to one. Yes, one. For the uninitiated, the SED rate measures the amount of inflammation in Robby's body. They like to see his lower than 13. So 1 is freaking amazing! Staying at 1 over the course of two month's labs is even more amazing. The nurse said to me, "That's like no inflammation at all." So we continue to slowly taper off Prednisone--we are down from 5 ml a day to just 2.5 ml. I can only hope things continue to move in this direction. It is so heartwarming to see him feel good and do normal kid things. I love it. I am looking to start some preschooler swimming lessons for him next month. He loves the pool and I think this will be a good opportunity to get some physical activity in that is compatible with his arthritis even if it's not doing this well down the road.

I was commenting to my husband the other day about how having a sick kid drops you into some sort of a weird time warp. I feel like we've been dealing with JRA for years and years, but it was this time last year that he was in the first stages of the illness and we were trying desperately to figure out what was wrong with him. I also can't believe it's only been four and half months since we started Kineret. I give those injections like a pro now--it feels like I've always done it. It's amazing the things we can adapt to when it comes to taking care of what our kids need.

On a different note, I am happy to report that my husband and I are expecting our first child together around the beginning of August! We are so excited and happy, but at the same time I am nervous. I am trying to imagine how I will keep myself from examining every little bobble and fever this new baby might have and wondering if it's JRA. I went back and forth a good bit about whether we should even do this because I was worried about giving another kid this illness. The rheumatologist assures me sibling incidents of JRA are incredibly rare. My husband also pointed out that this child will have a different genetic cocktail (Robby's father is my ex-husband). At the end of the day, I searched my heart and realized that I wouldn't not want Robby in my life--JRA and all--and I just have to take a chance and trust that God knows what is best and will lead us to where we are meant to be.