Our daughter, Kasey Grace was diagnosed with severe polyarticular Juvenile Rheumatoid Arthritis (JRA) at 15 months of age (Aug 2006). It has painfully affected many major joints of her body to the point of preventing her from walking for almost six months.
At 17 months of age, Kasey stopped walking and started to crawl on her forearms because of the extreme pain she had in her feet and legs. Her little body was so exhausted fighting this disease she often slept 16-20 hours a day. There was a period for six months during which time Kasey ate very little and lost a lot of weight. After dozens of trips to the Milwaukee Children’s Hospital for blood and physical testing, the doctors have her on oral medication twice a day and injections once a week.
"These doctor visits are not fun and she usually cries at each visit."
Since she started Methotrexate injections in December 2006 she has started to improve. She has a lot less pain. Kasey (who will be 2 on May 18th) is learning to walk for the second time. She's getting around pretty good, but it’s more like an 11-month old baby. Her right knee has a contracture causing mobility issues. Additionally, since the right knee is constantly inflamed, her growth in that leg is faster than her left leg. She has begun aggressive rehab now that she is in less pain. Kasey participates in physical therapy(legs), Occupational therapy (wrists and hands), and aquatic therapy every week to get her strength and functioning back. We make frequent trips to many doctors and she gets frequent blood tests to ensure that she is continuing to improve.
Fortunately, Kasey is no different than other kids with the exception of her mobility. She has an unbelievable happy demeanor and unlike most kids, she actually listens.
Behind the scenes, dealing with insurance has been far from pleasure. Deb has spent on average 5-7 hours per week battling claims and trying to get approval for the numerous doctors, therapists, tests, etc that she needs. That hard work has finally gotten Kasey seeing great doctors and participating in the therapies she should have gotten months ago.
This has been very hard on our family. No one ever wants this to happen to their kid, but it happened to ours and there’s nothing we can do but be very committed to ensuring Kasey the proper medical attention she needs.
You support and prayers are welcome and encouraged.
6 comments:
Team Uschan - What a brave kiddo Kasey is and what a story! I'm glad that she has such loving and dedicated parents to take care of her. Good luck and I hope Kasey continues to get better! Send pictures!
You Uschans are just awesome. Kasey is such a beautiful girl- her smile is endless and pierces the heart. She is a fighter along with the rest of the family and sets a great example for all of us.~ Jodi Ray
You Uschans are just awesome! Kasey's smile is endless and just pierces the heart. Keep fighting, you are an example and inspiration to all of us.
You guys are such great role models! Keep the positive attitude flowing and always remember to BREATHE...Our love and prayers are always with you and your beautiful family! Love, Nikki, Jim, Jimmy and Johnny
I'm so SORRY for your daughter. I've had arthritis since I was nearly 14 (wasn't diagnosed until nearly 15). I'm NOW trying to overcome it, because I've been letting it overcome me all the time I've had it. I pray that Kasey won't let arthritis control her, but she will control it!
Katherine
Hello from down the street (#508)!
Kasey is lucky to have parents like you--keep up the good work.
Happy Birthday to Kasey--see you this weekend.
Victoria
Todd
Thomas
Emma
Julia
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