Saturday, June 20, 2009

For anyone who doesn't know Jordan's situation...

I wrote this last year for our Arthritis Walk but I thought I'd add it to our blog for anyone new who comes across it or for anyone who's forgotten what it is exactly what we deal with on a day to day basis.

One of the last things any parent wants to hear is that there is something wrong with their child. After 6 months of not knowing what was wrong with our daughter, Jordan, we finally had an answer and it wasn't anything we were expecting. I was told Jordan had Juvenile Rheumatoid Arthritis. I was in shock and I remember thinking, She's not even 3.... kids don't get arthritis. There has to be another explanation. My daughter does not have arthritis. Finally I accepted that Jordan did indeed have arthritis. She had surgery a few weeks before she turned 3, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. Jordan started her medication and we thought she was doing pretty good. 6 months after her diagnosis we found out that she had inflammation in her eyes. It's been a roller coaster ride ever since. Here we are 4 years later I know so much more about JRA. Thankfully she has more good days then bad. She's on weekly medications, sees her rheumatologist every 8 weeks and if we're lucky she only sees her eye Dr. every 3 months. Usually it's about every 6-8 weeks. Jordan had to have a joint injection and it was one of the worst things I've ever sat through. Usually an injection will last about 6 month but Jordan's only worked for 6 weeks. About 3 months after the injection, I noticed her other knee has started to swell. Her arthritis is spreading. She’s now on Humira and methotrexate injections. She has a hard time fighting off infections because of these medications so she’s often sick and misses school. I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but here are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. There is nothing I can do to comfort her and it is a horrible feeling.

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