August 21, 2006

Camp sure did go by fast. The kids had a great time; it is a lot of fun to watch the kids together. As for the parents… I am having a similar experience to last year that it is just starting to sink in. I learned a lot of information (funny you think you know it all, but you truly don’t) and enjoyed hearing other people share their stories. This year there was a big focus on having people who were diagnosed with JRA at a younger age come share their stories as grown adults. I think the majority of the speakers had some type of JRA and their current ages ranged from 20-65. It is amazing to think how far the medications and treatments have come in a realistically short amount of time. As one of the speakers said “you have to be grateful that if the kids were going to get this disease they got it in an age with options and hope”.

I think I will allow a little more of camp to sink in before I go any further on that subject.
Sadie is doing pretty well – ankle is still being the big culprit of issue. Sadie has also been complaining that her left hip has been hurting; last night it was a four (which is a big deal for her… she rarely uses that number). She has also been complaining a lot that her back is hurting her. This complaint usually comes when she is sitting still for a long period of time and for me it is a new concern. Another concern is that her last lab tests came back with elevated liver enzymes again. Usually I know the reason for this (meds given too close to the blood draw), but this time that is not the case; it had been seven days since her meds were given. Children’s has asked that we give her methotrexate on Wednesday this week (usually Thursday nights) and then we will re-test her blood on the 28th when we go into see her rheumatologist and do some additional physical therapy. At that time I will be talking about a few other concerns I have with her and hopefully I will get some positive, reassuring feedback.

Please pray for Sadie’s little body to keep fighting and fighting hard to keep this arthritis as quite as possible. Please pray for strength and patience for Bill and I as we wait for some questions to be answered and to keep us going as this rollercoaster was a MUCH longer ride then expected.