Tuesday, January 21, 2014

Thoughts of a JIA Mom and JIA Kid

When I started a blog about Savannah's life with JIA (Juvenile Idipathic Arthritis) about two and a half years ago, it was because one of Savannah's teachers challenged me to put Savannah's journey on paper...to share the trials, her everyday journey...both, good and bad, and what has helped along this journey.  I was apprehensive at first,  everything was so, well,  negative.  Savannah could not walk in the mornings because the pain was so intense.  I would have to carry her to the bathroom and then the sofa.  I would have to brush Savannah's teeth and brush her hair because her hands hurt too badly to hold these objects.  I would cry in secret when I would sneak to Savannah's school to view her at recess...only to see all of her friends running as free as the wind and playing games like tag, while she sat on the sidelines and watched or played with small rocks she found on the ground.  I would try to hold back the tears as Savannah would beat her hands against her legs at night and say, "Please, make the pain go away!"  Medicines, oh... so many medicines. Needles being stuck in her, missing the veins, veins collapsing due to being stuck so many times.  Nausea, headaches, sleepless nights, lots of tears.

But now, well, I still have to assist Savannah a little in the mornings, but not so much.  We have found a medicine that truly helps manage the stiffness and pain, with little side effects, and that can be taken orally.  Savannah runs at recess!!!  At night, she still complains of hurting, but without tears. She sleeps fitfully, waking up three to four times at night to stretch because she is so stiff, but she manages sleep.

I am so thankful for the simple things...brushing hair, running, sleeping...things most take for granted.  Savannah told me in the last few days she still hurts everyday, but she rarely complains about it.  So, I too, choose not to complain!  Life is good, life is wonderful!  The wind is blowing, the sunlight dances amongst the leaves in the trees, the sky is blue, and life is truly beautiful! Behind every grey cloud, the sun still shines!

Savannah still wonders if she will ever know life without pain, but she chooses not to dwell on it anymore.  So, today, choose to be happy, to run through the grass barefoot for no reason at all (ok, it might be too cold for that), and notice God's beauty around you.  Blessings to all the people who have taken this journey with us.  There is light at the end of the tunnel!

-Jenny and Savannah

Wednesday, January 8, 2014

Juvenile Arthritis...Just Keep Living Your Life to the Fullest!

Savannah's arthritis continues to be manageable. Though, she still gets quite stiff and deals with daily pain (especially in the extreme cold!), she keeps on moving forward and smiling!  We stopped the methotrexate the week after we started it.  The combination of sulfasalazine and methotrexate made Savannah feel horrible!  Again, always weigh out your positives and negatives with drugs, and if the negatives outweigh the positives...try something else!

The sulfasalazine has worked better for Savannah then any of her other drugs  (Remicade, Orencia, Methotrexate, and Oral steroids to name a few).  So, we will stick with just the sulfasalazine for now.

Savannah's jaw MRI showed little inflammation and no further treatment needed!!  Whoo Hoo!!
Savannah's biopsy of her rash showed it was NOT Psoriosis, but eczema!  Another Whoo Hoo!!! (Note: The pitting in her nails still indicates psoriatic arthritis).
 So, we are feeling very blessed. Thank you for your continued prayers.

Savannah recently starred in her school play and did a good job if I say so myself!

Savannah has also found a new favorite pass time
...drinking hot tea!