Sunday, January 15, 2012

How it All Started

In December 2004 we were a typical family of 4 with a active toddler and needy newborn. Jordan was 2.5 and Matthew was just about 3 months old. Jordan adored her brother, I was getting into a routine with the kids and had pretty much totally recovered from the c-section. Life was good.

At some point Rick and I had noticed that Jordan would limp from time to time. It wasn't anything consistent but back in October we noticed she was limping while we were at a friends house. Looking back now, that's when it all began. Every Christmas Eve I make cookies. This was going to be the first year Jordan and I were going to actually bake them together. I got Matthew down for his morning nap and as I was getting things started I realized Jordan was walking really weird. After watching her for a minute I went and checked her over and asked if she fell or hurt anywhere. She told me no but after I saw her knee I don't know how we had missed something that huge on her.

I called Rick told him I was taking her to urgent care, grabbed Matthew and we were off. We saw the doc pretty quick and we were sent for x-rays. I was told there was no fracture and everything looked OK and that I should give her Motrin if she needed it. Her knee was red, hot and HUGE! How could it be OK?! But I believed him. On my way out I was told to follow up with our primary ped in a few weeks if there was still a problem. We went on with our Christmas as planned but by no means was Jordan ever 'OK' again.

We followed up with our ped and he repeated the x-rays and ordered blood work. This time I was told her knee had some fluid and that we should probably follow up with a pediatric orthopedic surgeon. OK, so something IS wrong. Our ped wanted us to be seen ASAP but the only ped ortho in the area was booked for 4-5 weeks so I took Jordan to another ortho in the same practice. He told us that she probably fell and would be fine. At this point she had had the swelling and had been limping for about 5-6 weeks. I noticed that the mornings were hard on her. She would call me to get her out of bed and bring her down stairs. She'd sit and watch TV or read books with me for a while then she'd start getting active. The same thing would happen after she woke up from a nap. We kept the appointment with the pediatric specialist because we knew something was wrong. Within seconds he told me she had JRA. Juvenile Rheumatoid Arthritis. After months of not knowing what was wrong with Jordan we finally had an answer and it wasn't anything we were expecting. I remember thinking, “She’s not even three....kids don't get arthritis. There has to be another explanation. My daughter does NOT have arthritis.” Dr. S wanted to do surgery to rule out anything mechanically wrong with the joint, to drain the fluid and take a tissue sample but he was sure it was JRA so he referred us to a ped rheumatologist as well.

Jordan had surgery a few weeks before she turned three, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. It took us 6 months to finally see the specialist who was going to help her. Six months after her JRA diagnosis we found out that she had uveitis, inflammation in her eyes. It's been a roller coaster ride ever since. She's gone from taking naproxen twice a day to having to take low dose chemotherapy weekly and having IV infusions every 4 weeks. The meds she's been on over the years are scary. They increase the risk if cancer and leave you with no immune system to fight off a simple cold. Jordan has had countless infections which left me scared not knowing if she'd be able to fight it or not.

I've spend years educating myself and others about juvenile arthritis. I can't even begin to count how many times I've heard "Kids don't get arthritis." or "She's too young for that. My Grandma has arthritis!" I wish that were true. The type of arthritis Jordan has is an autoimmune disease which means her immune system doesn't know the difference between her own cells and a virus. It attacks the joints, connective tissue, hair, skin and organs.

I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but there are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. I know first hand how she feels because I also have RA. It's not just the disease that makes a person with autoimmune arthritis feel bad-- the meds and their side effects are awful. Imagine the flu times a million. You're close but not quite there. I would gladly take the flu over RA and everything that goes with it any day.

But, Jordan is amazing. She takes all this as it comes. I'm not sure how she does it because there are days when I just want to crawl in a hole and die. If she can can deal with this disease then I can too. She's willing to try anything and if it hurts she stops. She does her best to keep up with the kids at school and for the most part she does pretty well. I'm so proud of her and hopefully in time she will beat this disease.

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