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.”

Tuesday, April 2, 2013

Helping Others ...and a New Diet! Pain, Pain, Go Away!

Running to support Claire!
Savannah had the wonderful opportunity to assist her best friend Claire (who has cerebral palsy) with Miracle League Baseball this last Saturday (Miracle League is for the physically and mentally challenged).  She encouraged Claire from the stands and then helped her run the bases in the last inning!  It was wonderful!  We have found the best way to get Savannah's mind off her own painful joints is by distraction...and what a better distraction than helping someone else in need.  Also, being around others with their own challenges helps Savannah not to feel sorry for herself... Hey, we all have some sort of challenge, right?!
Savannah, Claire, & Olivia

Update on Savannah: 23 Infusions of biologics, 70 shots of Methotrexate, and too many oral medicines to count later...and Savannah's pain is not so good.  Not sure if the medicines have quit working or what, so we are trying something different (and with no negative side effects!).  Savannah's juvenile rheumatologist challenged her to go dairy free for three weeks and see if that helps with her inflammation and pain...though her rheumatologist thinks the diet change is "madness" and will not help.  Many have said that removing dairy and gluten from one's diet can really help improve one's quality of life and help alleviate pain...even autoimmune related.

Well, we are taking the challenge and stepping it up!  We, as a family, are going dairy and gluten free in hopes it will help alleviate some of Savannah's pain and improve her quality of life.  I have to say, I would love to prove Savannah's doctor wrong on this one!!!  So, we are on day "two" of our new diet plan...I will let you know how it goes!
Any and all advice is welcome on gluten, dairy, or paleo dieting...especially if you have some kid friendly recipes that are dairy and gluten free!  Let the diet "Madness" begin!!!

When the game was over, Claire and Savannah's bodies were over, too!
Photo form left to right:
Savannah being carried by her father, Claire's little sister being carried by Olivia, Claire being carried by her father.
What we will do for the ones we love.