Friday, April 12, 2013

Savannah's JIA Journey ...From the Beginning

People often ask about Savannah's diagnosis with Juvenile it came about, her symptoms,  and so on.  I started a private blog a couple of years ago that is lost in the" cyber world" (but, I still have it on my personal computer!).   Thank you for taking this journey with us and praying for our girl.  We take one day at a time and enjoy as many moments as possible!

So, I share the beginning-

Savannah’s Journey with Juvenile Arthritis -

On August 23, 2011, at the age of eight years old, Savannah was diagnosed with Polyarticular Juvenile Arthritis (Polyarticular means it affects five or more joints in the first six months of the disease).  Just six days later, a Uveitis cell (arthritis in the eye) was found in Savannah’s right eye.  However, this is not where Savannah’s journey with Juvenile Arthritis begins.

At the age of four, Savannah had a difficult time writing, coloring, and especially cutting with scissors.  We were told, by Savannah’s pediatrician, that it was “delayed motor skills” and “to seek occupational therapy”.  Occupational therapy was given in kindergarten, first, and second grade.  There was small improvements, but the pain in her hands and difficulty writing and cutting never went away.  Savannah kept trying, she kept persevering. 

At the age of seven and the end of her first grade year in school, Savannah discovered a deep love for soccer.  Her first season was wonderful...pure excitement and fun!  By second grade, she played both fall and spring leagues.  Her feet were hurting as she practiced and played in the fall season.  We attributed it to her being out of shape or her soccer cleats not fitting properly.  By the spring of her second grade year, her feet hurt so badly after practices and games, her father often had to carry her off the field to the car.  Still, she never missed a practice, nor a single game.  We took her to an orthopedic surgeon. He took x-rays of her feet, gave her heal lifts for her soccer cleats and insoles for her tennis shoes and explained the pain was a result of being “slightly flat footed”.  

By the age of eight, Savannah no longer felt like running, walking, or taking art classes.   She didn’t feel like doing much of anything.  She woke up many a morning complaining her feet hurt, though she had done nothing significant the day before. 

On Savannah’s second day of school of her third grade year, Savannah and her classmates were asked by their teacher to write as many numbers as they could (starting with the number “1”) in a one minute period of time.  Savannah picked up her pencil and wrote to the number “14” before she had to drop her pencil because of the SEVERE pain she felt in her fingers and hand.  I took Savannah to her pediatrician the very next day.  She recognized Savannah’s symptoms in her hands and feet, now, as being juvenile arthritis.  And so, our journey began with this disease I did not even know existed, especially in children... Juvenile Arthritis.

We invite you to take this journey with us through pictures and words.  However, I wish for no child to have to experience the pain that Savannah endures daily or the treatments she has to take to function as normally as possible.   God is going to use this girl and her journey to touch many lives.  May it touch yours.

Savannah's Short term goals (in her own words):
  • I want to be able to write without my hand hurting.
  • I want to help raise awareness about juvenile arthritis.
  • i want to know life without pain.

“Life isn’t about waiting for the storm to pass...
                                     It’s about learning to dance in the rain.”


  1. Jenny, tears in my eyes after watching your daughter's story, regarding it looks like your most recent video on youtube. (I could not post a comment there for some reason). I will never stop praying and hoping for a cure for this awful disease. My daughter also suffers and can relate. Never stop fighting, never give up hope. May the Lord bless your family with hope, courage, perseverance and peace as you continue to travel this difficult road.My daughter's story can be found at:
    perhaps the girls can somehow correspond with one another

    1. Arthritis does not define you. It refines. you" -Well said by a smart mom in the above comment's video. I would also like to add, "God will not protect you through what He can perfect you. He is perfecting our girls...He knows they are strong and can make a difference with helping others through this disease they live with each and every day. -Jenny

    2. Not sure how to contact you. Your daughter's video is very inspirational. May I use the first song and some of your inspirational quotes to create an JIA awareness video about Savannah? -Jenny

  2. We still pray daily for God to remove Savannah's pain.

    1. Thank you sweet Thornton family. Prayer is powerful. -Jenny

  3. I just now found out about that a child CAN have this even though the blood tests said those factors weren't there. Every since I was a little girl I had foot pain and sometimes I had hand pains. The foot pain at the time was the worst worst and stood out the most. I would cry and cry and hated walking when the pain would be happening. My mom finally took me to the Dr where he said oh it's just growing pains pains take Tylenol. So every time I started hurting I would cry but my mom would always heat a towel up in the microwave overs and over cause the hotter it was the more it helped. We went back to the Dr later on and told him it still hurts and so he sends me to a foot Dr. My hands and stuff had been hurting more by then but it was winter I just chalked it up to the cold air. The foot Dr said it was because I was flat footed and I had to get insoles. They never worked and I just dealt with it into my teen years. I learned to figure out the Times before I would hurt by then. Rain, snow, cold weather or cold air conditioning, writing too much, playing guitar a long time and walking a lot like all day. I have always had to take a super hot shower in the mornings to make me not feel so sore and achy. I went to the Dr as a teen 16 I think and she drew my blood and sent me to the foot Dr again even though I said the same pains in my hands now too. She said it didn't show up as having a that factor in my blood so it was just flat feet. I 've moved on from the pain and just deal with it now the best I can. It's gotten worse more in my hands now than ever. It is killing me to type this using just a finger on my tablet. I can't open up sodas or twist my hand the way I used to could and if I do it hurts so bad like I'm forcing my hands to do something they can't. Like my joints are gonna snap if I move them a lot. I just want to curl them up and sleep on days like this. I decided to search bone pain in children and young adults and JIA showed up. I want answers so bad. How can flat feet effect my hands? Is all I want to scream at my doctors. I'm only 23 and I feel like an old woman who has to get the non child proof bottle and hands all curled up not able to move them. I had some jaw problems as a teen and got braces to help it move my jaws in place. It helped then but they are starting to go back the way they were. I had bad hip and back problems with my last pregnancy. My Dr took a x Ray after having the baby says it scoliosis or something cause my spine is curved slightly. My immune system has never been great. this info you have provided has inspired me to go to the new Dr I got and bring it up. I hope she will actually listen and maybe get some help before I wind up never able to touch my guitar, or write,or walk to the park and just do normal stuff ever again. Thanks so much.

    1. Heather,

      See below to help with your fight for answers! -Jenny

      From :

      "One of the most frustrating comments to parents of kids with Juvenile Arthritis is “Are you sure? That’s an elderly person’s disease!”
      Well, yes and no.
      For the uninitiated, the word “Arthritis” summons up images of hobbling elderly, gnarled fingers, and remarks about the weather in relationship to bum knees. Others may think about that nagging sports injury, or the aches and pains of getting older and a body worn by time.
      They are right. That IS arthritis, and most of the time, kids don’t get it. More specifically, the type of arthritis people are thinking about is osteoarthritis, and it is a result of injury or wear and tear. This is the type of arthritis that most people are familiar with.
      That is not the whole story. There is another type: rheumatoid arthritis. Rheumatoid Arthritis (RA in adults or JRA/JIA in children) is an autoimmune condition that is far more than aches and pains. Autoimmune diseaseNational Institute of Health:
      can strike at any age, so children can and DO have this form of arthritis. According to the
      Juvenile rheumatoid arthritis (JRA) is a type of arthritis that happens in children age 16 or younger. It causes joint swelling, pain, stiffness, and loss of motion. It can affect any joint, and in some cases it can affect internal organs as well.
      One early sign of JRA may be limping in the morning. Symptoms can come and go. Some children have just one or two flare-ups. Others have symptoms that never go away. JRA causes growth problems in some children.
      No one knows exactly what causes JRA. Scientists do know it is anautoimmune disorder, which means your immune system, which normally helps your body fight infection, attacks your body’s own tissues.
      In fact, nearly 300,000 children in the U.S. have been diagnosed with some form of Juvenile Arthritis. It is believed that even more may suffer from this condition, but have been misdiagnosed with other diseases, or not diagnosed at all (read the article here.) Yet, it is one of the most common types of chronic childhood illness.
      So, how do I handle the “kids don’t get arthritis” comments now? I head them off before they can be said. When asked what is wrong with my child, I now say “He has an autoimmune disease, where his body is attacking itself. It’s actually a form of juvenile arthritis.” I frame my response so that they understand how serious the issue is before I say its name, and the picture they create in their head couldn’t be further from your grandparent’s arthritis. In the meantime, I’ve avoided a frustration for both me and my children, while educating one more person that YES, Kids Get Arthritis Too!"

  4. Heather,

    You need to have your doctor refer you to a rheumatologist. You cannot usually get into a rheumatologist without a referral, but fight for the referral! Your story sounds so much like my daughter's story. She wears tennis shoes with orthotics every day (even to church many a Sunday), just so her feet can make it through the day. The orthotics help, but the pain never goes away. Savannah looks forward to summers so much because she does't have to write or use a computer. Using a computer is better than holding a pencil and writing, but it still hurts her hands so much...especially using the mouse. Using scissors is basically impossible, unless she holds them this real weird way and the edge she cuts is all jagged. Summers are her best months, but when storms come or the barometric pressure changes, she hurts much more. The cold months...much worse. Hot showers in the morning are Savannah's best friend.
    Heather, keep fighting to get answers!! Medicines can really help, though you might have to go through several to find the right one for you. Savannah suggests getting some foam grips for your pens, toothbrushes, or hair can find them on Amazon, I believe if you search "foam grips". They come in different sizes and can fit on most anything. This has helped Savannah do everyday tasks with her hands and not hurt as bad. She also suggests using a rolling desk chair to get around in the mornings (at least if you have hard floors). Savannah's feet hurt badly in the mornings, and this allows her to get around well. She keeps her rolling desk chair by her bed for this reason. I am going to try to find you some information to take to your doctor to fight your case. This blog is so worth it if it helps people like you. If you have any more questions or concerns, please write.
    -Jenny & Savannah
    PS Sorry. Having to reply "anonymous" because I am visiting my parents and on their computer. :)

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