August 19, 1995 – I am born as David Copperfield said! My pregnancy with Amanda was uneventful except for some mild high blood pressure. My labour began at 7:15 that morning. We arrived at the hospital, went through the requisite testing, and were sent to a labour/delivery room. Amanda, however, was reluctant to enter the world – she kept scooting back up every time I tried to push her out! The use of forceps convinced her it was time to join us! She weighed in at 8 lbs 13 oz and arrived with a healthy scream! Tim (DH) and I instantly fell in love with the tiny little ball of fury!
February – May 1997 – The world stopped and we hopped on the roller coaster that is juvenile arthritis. We were very fortunate that they were able to diagnose her arthritis quickly – she had a very classic case of pauci-articular JA. For some kids, diagnosis is agonizing because it’s often a case of determining what it ISN’T before you can determine what it IS. She had a lump on her knee that, x-rays showed, was not an injury or caused by a bump. Her blood work confirmed the diagnosis. Luckily, we were able to start treatment for her fairly quickly. She was started on Naprosyn, an anti-inflammatory, and we started the waiting game. Naprosyn is generally the first weapon in the arthritis battle – most children can tolerate it fairly easily and, for some, it can make a world of difference. Unfortunately for Amanda, it didn’t do the trick.
So we were sent to the Hospital for Sick Children (HSC) in Toronto to meet with a pediatric rheumatologist. Well, there aren’t enough good words to describe what a God-send Dr. Brian Feldman was! We weren’t aware that we were meeting with him to discuss joint injections – so when he brought the topic up, needless to say we were thrown into a panic. What?? You want to stick a needle into my daughter’s knee? Are you INSANE?? After prying my fingers off of the ceiling, he calmly explained the procedure, the side effects, and the after care. While we still had some apprehensions, he was very clear about the fact that we needed to be aggressive to maintain her mobility and range of motion.
The rheumatologist instructed us that we needed to get a pair of custom braces made for Amanda’s legs to wear while she sleeps to make her legs straighten better. It’s made using a piece of plastic about 12 inches long and 8 inches wide. It’s put in an electric frying pan of water and softened, and then pressed against Amanda’s leg to give her a custom fit. Initially, I figured it would be no big deal to get them made. Well, Amanda had other ideas! When the physio from the Arthritis Society put them against her leg, judging from Amanda’s reaction, you would have thought we used a hot poker!! She writhed and screamed even though I was touching the plastic and it wasn’t that hot. I guess this, heaped on the other poking and prodding she had to endure, was just too much. What is pretty comical about this whole situation is Amanda insists on wearing both leg braces, even though, right now, she only needs it for one leg! She goes to bed and waits to be “strapped in” and insists she needs both of them on or she can’t sleep! The rheumatologist thinks this is pretty funny. So we’ve now made it part of our bedtime and morning routine. Every evening, we all tromp into her bedroom to strap her in. And, each morning, she starts singing so we know she’s awake and wants to be “unstrapped”.