The Radday family has had a fairly calm fall and we are all back into the full swing of things with school and activities. Tea and Talia are both doing some dancing and swimming. Tea is enjoying some theater and will be in Once on this Island, Jr. in early December. But the big event we've been gearing up for all fall is the New Haven Jingle Bell Run for the Arthritis Foundation.
The Arthritis Foundation is near and dear to us and we are thrilled that Tea not only gets to be the Youth Honoree for the walk but that we can support them this year through fundraising. The summer before Tea started first grade, while at the beach with our family, Tea complained that her knee was really bothering her while she was laying in bed. As any good mother who is just trying to get her kid to sleep does, I told her to be quiet and go to sleep and I would look at it in the morning. She continued complaining so I reluctantly got her out of bed and found that her knee was quite swollen. Adam and I figured it was an injury and the next day when she got knocked down by a wave and was now in significant pain we took her to urgent care in Ocean City, MD. They x-rayed the leg and there was no break so we iced for the week and planned to follow up with doctors when we returned home. We had no idea this was the start of a life-changing diagnosis.
When we first followed up with an orthopedist he pretty quickly dismissed us, told us Tea had Lyme disease and with a course of antibiotics she would be fine. We brought her to her pediatrician who ran a bunch of blood work and we started her on some meds. A few days later her doc called us back and said there was no evidence of Lyme but we could continue to take the antibiotics just in case there was a false negative. However, she noted that her ANA test was positive and pretty high so we should really get her checked out by a rheumatologist. We ended up back at the orthopedist's office and they drew some fluid out of her now even more swollen knee (and that was traumatic and painful). By October we were in the pediatric rheumatologist's office at Connecticut Children's Medical Center and got the diagnosis of Juvenile Idiopathic Arthritis.
We had no idea kids could get arthritis! Like most people, we assumed arthritis was a stiffness in the joints people get when they are old. We all know someone with arthritis and they are usually old. My grandmother had arthritis. It seems like everyone's grandparent has it, right? Juvenile Arthritis is unlike the osteoarthritis old people have. Juvenile Arthritis is an autoimmune disorder, similar to Crohn's Disease, where the body just starts attacking itself for no reason. There are many types of JA. It can affect 4 or fewer joints (oligoarticular) or lots of joints (polyarticular). It can affect specifically the back or can be systemic or can come with rashes. Many children with JA also have other issues including Crohn's. Tea was initially diagnosed with oligoarticular arthritis and it was only in one knee. We were told there was no way to predict if the arthritis would stay in just one joint or spread to more joints. We learned that some people go into remission and stay in remission forever. Others go into remission and then flare and continue in that cycle for life. Others are persistently inflamed. Unfortunately, there are no tests or ways to determine what Tea's course will be.
Tea now has arthritis in both knees. She started with just some oral medications, but they did nothing to reduce her swelling and eventually she had to have a weekly injection. This was a nightmare for all of us because Adam had to give her the shot each Friday night. It made her extremely anxious, made her blood tests for her liver extremely out of whack and was just a mess. Since August of 2016 Tea has been on an infusion medication. This means every six weeks we go to Hartford to the Children's Hospital and she is hooked up to an IV for two hours to get her medication. This has worked very well for her. She is not swollen and her pain is pretty tolerable. However, she still has days of high pain and walking for a long time or sitting for a long time really bothers her. She has a standing desk at school and when we were at Disney World last February she rode in a wheelchair most of the time.
Through this process of diagnosis and now learning to live with chronic pain Tea has been an absolute champion. When she goes for an infusion now she doesn't even flinch as they take three vials of blood from her little arms and then start the IV. She can talk about and articulate her pain in a sophisticated manner and is learning to advocate for herself in school and with doctors. She knows when she needs medicine and when a heat pack will help her feel better. The Arthritis Foundation has helped us learn about the accommodations she should get at school and what she may need in the future. They have taught us about pain management without medication, anti-inflammatory diets and have allowed Tea to meet other kids that have JA.
We are excited to support the Arthritis Foundation this year. We have been shown so much love from so many of our family and friends donating to this cause already. Tea cannot believe how many people care and have donated money to her team. Former teachers, friends from all different times in my life, family from near and far have all donated to show their love and support for this little warrior. She is excited for us to all walk or run the Jingle Bell Run together. She will get to lead off the race and is enjoying the positive attention for her arthritis for once.
If you haven't donated yet and would like to contribute to Tea's Pride, just follow this link!
And you can watch Tea's video here!
