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Nov 25, 2017 Latest post:
Dec 6, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Since August of 2017 Kelly has struggled with pain which started in the knee. After 3 months, 6 specialists, 5 ER visits and tests galore, we might have a diagnosis for Kelly's struggles with pain. The infectious disease doctor thinks she has CRMO which stands for Chronic Recurrent Multifocal Osteomyelitis. It is a rare condition affecting 1 in 1 million people. Always knew she was 1 in a million but not in this way. It almost always impacts children ranging from 4 to 14 with 10 being the median age. Girls get it more often than boys. It is an autoinflammatory disease. They diagnose it by ruling out other conditions. Doctor ordered an MRI which was done Wednesday, Nov. 22, blood work which we did Friday, Nov. 24 and a full body bone scan. The bone scan the doctor is working on getting approval for with insurance. This disease causes inflammation in the bones and moves around to different areas. Kelly's right knee pain went away and she was able to walk, but then her left wrist started hurting. Then her shoulder started hurting Wednesday the 22nd. Friday morning while getting ready for the blood work, Kelly's right ankle began hurting so much she couldn't put pressure on it. So, this journey is far from over. Lots of ups and downs to look forward to. I think the goal is to get diagnosis confirmed (though we think it fits), then get treatment. First line of attack is NSAIDS which she is already on as well as muscle relaxer at bedtime. Second treatment would be corticosteroids. I believe therapy such as PT, OT and possibly counseling might be offered as well. Maybe even aqua therapy too. I don't know when we will find the time and money for all of that, but trusting that God will see us through. Please pray for our family. Thanks!