Thursday, December 18, 2014

Update on Life with JIA



I haven't posted in several months, so I decided to post an update on Savannah.  Over all, life is good...yes, it is really good! The sulfasalazine seems to be the wonder drug for Savannah.  They have increased her dose to the max for her weight, and though she is not pain free, the pain is very manageable.




You change up dreams on this Juvenile Arthritis journey, and that is okay. Savannah once wanted to be a soccer star, but she now sings in her middle school chorus.  We are taking lemons and making lemonade!  I do not know what is in store in Savannah's life, I just know each day is a gift and we have to make the most of it.



Lastly, Savannah, her father, and I all walked/ran in the Jingle Bell Run for arthritis this month....and Savannah did not use her wheelchair!!  She and her father might have taken some short cuts...and Savannah might have even been carried on her father's back at points (thank goodness for a strong man), but Savannah made it! Thank you for following Savannah's journey.  There is hope on this journey and we hope this blog blesses you in some way.



                                                                   Happy Holidays!!!
                                                            Jenny, Eric, and Savannah




Friday, August 15, 2014

Did you know?? Facts about this kid with Juvenile Arthritis.

Small facts about Savannah (and many kids with Juvenile Arthritis)
that you may not know:

1. Savannah uses an electric toothbrush when her hands really hurt because it has a bigger grip and easier to use when she is hurting.

2. She rarely complains, but instead quietly slips away to see the school nurse to take motrin to help alleviate pain so she can write with a pencil.  The simple act of holding small items (hairbrush, pen, toothbrush, fork) is very hard for someone who has arthritis in their fingers....true for both young and old!

3. First thing every morning (going on five years), Savannah is pushed in a rolling desk chair from her bed to the couch to avoid the pain of standing on her feet when she first wakes up.

4.  Savannah uses a rolling backpack at school (even as a middle schooler).  This really helps many children with JA. (We like PBteen Gear Up Rolling Backpack.)

5.  When Savannah's hands hurt too badly to write anymore, she will tell me (mom) what to write and where to even punctuate on homework.  For these moments, I am "her hands".

6.  Savannah's working motto: "Do the best you can at the pace you can."  Savannah has been one of the last people to turn in classwork and test work in school for years.  Her hands can only write so fast.

Savannah's pencil grip.  These make grasping the pencil less painful for her.
Pencil grip seen above: Ableware Foam Tubing

Monday, May 19, 2014

Arthritic Hands Doesn't Stop His Girl!

Savannah with her school art teacher.
Savannah may have arthritis in both her hands, but she can still produce some incredible artwork!  As a result of her God given talent and perseverance, Savannah won the Art Award at school today! Prayers and medicine has allowed Savannah to return to doing artwork, and we are so thankful.

Thank you for praying for Savannah.


Friday, April 25, 2014

I feel HAPPY!

 "Life doesn't get to be put on pause until you can feel better                                                                        - time keeps ticking and dreams collect dust."

                                                                                        (wise words of a JA friend)


I often tell Savannah that life here on Earth will always have struggles and problems.  It is how we deal these struggles and problems that makes all the difference.  Savannah still struggles with daily pain, especially in her hands and feet, but she chooses to feel happy!  We are thankful for Sulfasalazine that Savannah takes orally twice a day, for it truly helps keep her head above water.

Three years ago, Savannah seemed to always be looking ahead to a time without pain.  She now realizes that this day may never come...and that is okay ...because Savannah has chosen HAPPINESS!


Tuesday, March 18, 2014

Christine's JRA Kids - Savannah made the video...Can you find her!?!

I

I  (Savannah's mom) haven't written on this blog lately.  It is not because Savannah's arthritis has gone away...for there is no cure.  She is not even in remission.

I haven't written because I don't want this disease to be the center of my world...of Savannah's world...though, arthritis is a part of Savannah's world every day.  I want to "kick it to the curb", but I don't know how.  So, I encourage Savannah, pray for her, and help her to keep living her life to the fullest the best she can.

Savannah tells me every morning, when she first wakes up, that she doesn't feel good.  I often wonder what it is like to not feel good every day of your life...especially as a child.

Most of Savannah's afternoons are made up of resting on the couch, for school has taken out of her all her strength.  This is okay, but I always thought children ran and played after school...but, this has never been for Savannah.

Everyone has challenges...some bigger than others.  It is how we deal with these challenges that makes all the difference.  For Savannah, it is resting when she needs rest, and focusing on other things than her arthritis.  I am trying to focus on other things, as well...Not, because juvenile arthritis is not important, but because there is so much more to life!

We are thankful for celebrities like Christine Schwab for making this video and raising awareness.  Please continue to pray for these children.  If you have any questions about juvenile arthritis, please leave a comment.  You are not alone on this journey.  Love, Jenny (and Savannah)



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!