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.


  1. What awesome news...I am so glad that Robby is doing better and that his sed rate is 1, that IS amazing!! It makes such a huge difference when your child is feeling well.. we have Ayla's blood drawn this week so I am anxious to see what it says..

    Congratulations on your new little one.. how exciting!! I felt the same way when I was pregnant with my now two year old.. but he doing well without any signs or symptons of JRA.. It is very rare for a sibling to also have JRA..

    Hope you have a wonderful pregnancy!!


  2. "It's amazing the things we can adapt to when it comes to taking care of what our kids need."

    So true. It's hard for me to believe we've been on this ride for 5 years. Seems like yesterday I was calling my husband to tell him I needed to take J to urgent care because her knee was twice its normal size. I remember being told she needed surgery and when that day finally came I cried my eyes out because I needed to leave my baby in the care of someone else.

    I still remember it all like it was yesterday.

    I'm glad Robby's ESR is down. J's has been right around 5. Let's hope they stay low!