March 2005

March 2005 – So, if you’ve been reading this blog, you may notice there is an almost five year gap between this entry and the last one. That’s because we had five years of peace! Amanda was in a drug-induced remission – her arthritis was under such good control, she had minimal pain and required minimal treatment. We did have one significant change to our family – June 7th, 2001 Sara Grace was born! Amanda had made me promise, from the moment that I informed her we were expecting another child, that it would be a girl. Well, I delicately explained to her that you get what God gives you and we can’t really put in an order for what sex we would like. We had tried for two years to have Sara – and had a miscarriage in that time period. It was just as we were heading into Amanda’s significant eye problems that it happened. I think God was trying to tell me I had too much on my plate to have another baby. I firmly believe that all things happen for a reason – even if that reason isn’t evident at the time and you really don’t care what the reason is because you’re too clouded with grief. Hindsight is always 20/20 and it probably was for the best. I don’t know how I would’ve handled Amanda’s surgeries with a newborn.

Anyway, back to Amanda’s story. We changed local opthamologists – I had no qualms with our former doc’s expertise. However, his bedside manner left much to be desired and I thought it was time we sought out a second opinion. A new opthamologist moved to town and we were informed he was accepting patients like Amanda. It’s often difficult to find an opthamologist who will take on children – not all will. I called his office and asked if we could just meet him – Amanda felt it was really important to find someone who she felt was treating her as a person, not just an eyeball. We arrived at his office and he came out and Amanda immediately felt at ease. He invited us to chat in an exam room and he spent most of his time speaking with Amanda, only speaking to me when he was asking a question she couldn’t answer. We thought that he was probably someone who we could work with – he wouldn’t be offended if we’d ask for a second opinion, who would answer questions without feeling we were questioning his authority or expertise, and who would take the time to ask “How are you?”, instead of just “How is your eye?”. He’s energetic and upbeat and isn’t afraid to send us to the pediatric specialist should the need arise. He was also willing to take Amanda off of her methotrexate. The uveitis was under such good control, and her joints appeared to be doing well too, he thought we could slowly wean her off of the meds and see how she tolerated it. We began the weaning process December 2003 and took it very slowly, decreasing her dosage by 2.5 mg (or 0.1 cc) every 12 weeks or so. She had her last dosage on March 18/05. Unfortunately, it wasn’t long after that where the joint problems reared their ugly head once again.

We had a regular check-up appointment with our local paediatrician in March and he couldn’t find any effusions (fluid and swelling in the joints) but Amanda was complaining of pain. Not long after that, we had an appointment with Amanda’s physio and she was able to feel significant fluid and swelling in her right elbow, left knee, and right ankle. Dr. Feldman was contacted and we were scheduled for another round of joint injections.