Now for Kyra...

Kyra's situation is becomming frustrating and stressful :( Each dr runs yet more tests and we find out more information, which is great, but frustrating that we're told that it is NOT what they'd previously told us. I hadn't blogged about it previously, but we found out last week from another set of scans and bloodwork that the rheumatologist decided that she does NOT have JRA.

So, they sent her back to the neuro surgeon, who she saw on Thursday. He sent us down to xray for another series. This time they wanted to extend her neck a bit more. They laid her body on a foam pad and had her hang her head over the edge. With this open angle they got a MUCH better picture of what's really going on at her C1/C2. What they thought was fusing turns out to be minor, normal fusing for her age BUT it revealed a small tissue mass. At this time, it IS putting pressure on her spinal cord, but it's not compressing it. Because of her age, the severity of a biopsy with it being against her s.c., and other factors, he wants to monitor it for the next 2mths before we go that route. She goes back in July for another MRI and Xrays and if anything has changed, or the mass has grown, we jump straight to a biopsy.

Every parents worse nightmare - the dreaded 'c' word. No one wants to hear it, no one wants to think about it. You want to hope for the best and not think about the worst. It's going to be a very long couple of months :(