If you have been reading for a little while, you have probably read that my daughter E suffers from a chronic, lifelong autoimmune disease called Juvenile Arthritis. She was diagnosed just after her second birthday after several weeks of symptoms, including a very swollen knee and as a result, a severe limp. You can read more about my daughter’s JA HERE.
Last spring she started Physical Therapy after having a successful steroid joint injection in January (which reduced her inflammation her knee). E’s JA had caused her to lose strength and mobility in her right knee and leg and so there I was….the therapist on the other side as a parent.
Though my child does not have the kind of “special needs” that most people think of when they hear that term (and like the children I typically work with), my daughter does in fact have special medical needs. Even though my daughter’s JA is actually quite mild in comparison to others, our lives are still filled with constant doctors appointments and therapies (not to mention the daily medications and the weekly injections we have to give her).
She graduated out of PT with a home program for us to continue to do at home (she still has quite a bit of difficulty going down stairs bearing weight on her right leg, but it’s improving with time and practice). However Esella’s JA *spread* so-to-speak to several of her fingers and her right hand has been particularly effected by her JA. He middle finger on her right hand has been swollen for nearly a near now, and other fingers have followed suite over time in both hands. Recently I noticed that she no longer held a crayon appropriately. She turns three this month and I became worried about her ability to write. So we got a prescription for OT.
Her assessment was Monday and she indeed has quite a bit of weakness in her fingers. The OT (who is a certified hand therapist and was AWESOME with E) asked her to make her hands “quack like a duck” and to my surprise, she couldn’t do it! Also, we have been working for months on getting her to put up two or three fingers at a time (to show her age and to count) and she hasn’t been able to do it. It turns out that her muscles are just too weak.
This disease causes swelling and pain in joints, yet E doesn’t complain about her fingers. Her idea of “pain” is just so different from ours since she lives it all day every day. However last night when I was trying to help her hold up three fingers to practice for her upcoming birthday, I noticed she winced a little. I asked her if her fingers hurt and she said yes.
My daughter can’t even hold up her fingers to show how old she is! So, occupational therapy, here we come! I’ll keep you posted on her progress 🙂
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