Wednesday, September 25, 2013

Do you know what JA is, I didn't?!?!?

First, I do have to say that this is not the same thing as the arthritis we heard our grandma complaining about all the time, it's not "old people" arthritis. Though Bella may look "okay", she is almost always in pain, she does a great job of masking it. Bella, just like any other kid wants to enjoy life and not be known as the girl that has a problem.
Juvenile arthritis is an autoimmune disorder. The immune system helps fight off harmful bacteria and viruses, but in an autoimmune disorder, the immune system attacks some of the body’s healthy cells and tissues. It is unknown why this happens or what causes the disorder. Some scientists believe it is in a child’s genes (passed from parents to children).
Arthritis typically affects the joints but JA can involve the eyes, skin and gastrointestinal tract as well.
Some symptoms of juvenile arthritis are joint swelling, pain, and stiffness that persistent. Some signs :
  • Morning stiffness or inability to walk
  • Joint pain and swelling
  • High fever and skin rash
  • Fatigue
  • Eye infection, swelling, and vision loss
  • Swelling in lymph nodes in the neck and other parts of the body.
Most children with arthritis have times when the symptoms get better (remission) and other times when they get worse (flare). There is no cure for juvenile arthritis.
Arthritis in children can cause eye inflammation and growth problems. It also can cause bones and joints to grow unevenly. If the joints are properly cared for, it could cause sever joint damage which requires surgeries.

Right now Bella is affected in the following areas; knees, ankles, hips, shoulder, right wrist, neck, eyes, skin, gastrointestinal tract, and most recently her back.
With her diagnosis we found out that she is at high risk for Lupus, Diabetes Type 1, Chrone's Disease, and other immune disorders.
Our goal is to get Bella into remission but the hard part is that we don't know how long it will take to get there. Once you are in remission you don't know how long it could last. They have told us that remission could last weeks, months, and if your lucky years. It's the world of the unknown for us, always wondering what tomorrow will bring. Each day is a new challenge, but we are learning and trying everything the doctor/therapist suggest. As expected it has been emotionally tough for Bella. Daily she goes through a range of emotions because she is sad, anger, confused, and disappointed. All she wants is to be a normal kid that can do everything. She joined Cheer Tyme this past summer and we had to withdraw her a month into her lessons.  Watching her friends do gymnastics has been the most heartbreaking for her. Though she still sneaks in a few cartwheels, splits, and flips....she knows that it would cause her pain later. But, we have become good at taking our sad energy and focusing it on something positive in our lives to help boost Bella's spirit.
So for now we spend most of our week at physical therapy and at appointments. We are changing our routines and trying to find our "new normal" life with JIA.

5 comments:

  1. Bella,
    I am sorry you are in such pain this week. Emilia also is sad to see her friends flipping and tumbling when she can't do it. I have a feeling you two are going to be spending alot of time together!! We love you and want the best for you. Please call us if you need some laughter and silliness, we are always here for you. Natalie

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    1. Thanks Natalie. I appreciate it. This week my mom said we can come visit Emilia. What day would be good? Tell Emilia I said Hi!

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  3. I was thinking the other day about what Bella might be able to do that won't hurt her joints. SWIMMING!!! I have read that floating in the water, since it is equal pressure on all parts of the body, is actually comforting to the arthritic body. Maybe she could look into that!! And it will keep her active too!! Love you Bella!!

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  4. We are looking into other options for Bella. Her current physical therapy is done in the pool. So, we are hoping this helps her. We have mentioned swimming as sport and she is not interested (yet). She may learn that the cheer is too much on her joints. She is our work in progress!!! xoxo

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