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

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!

2013 Jingle Bell Run benefiting the Arthritis Foundation

Today was the Jingle Bell Run for Montgomery, AL.  A lot of money was raised...YEA!  Best of all, Savannah was able to walk most of the 5K race...something she has not been able to do the previous two Jingle Bell runs!  Whoo Hoo!!  Thank you to all our close friends who walked/ran with us in the race.  You are such a blessing in our lives!




Medical update on Savannah:

Savannah started back on methotrexate yesterday.  She will take it along with the sulfasalazine.  Savannah's rheumatologist called today to confirm the rashes on Savannah's body appear to be psoriasis, another complication/symptom of Savannah's arthritis. The methotrexate should help with the psoriosis and joint pain, though.  The good outweighs the bad, so we are thankful!

More drugs, More M.R.I.'s, Less pain...maybe.

Savannah saw her juvenile rheumatologist yesterday.  Here is the latest:

Savannah's back pain has greatly increased...the rest of her joints are about the same  (in pain, but manageable).  The newest treatment is this:

-Continue taking Sulfasalazine twice a day orally.

-Adding Methotrexate, by injection, every Friday (hello methotrexate, again). For those who don't know, Methotrexate is a chemo drug. 

-Going to try a muscle relaxer at night to see if it helps with the back pain.  This is only temporary (like a couple of nights)...just to see if it helps.

-The word "Humira" came up.  For those unfamiliar with Humira, it is a biologic drug and it is a real burner when injected.  I (mom) told the doctor "no", but Savannah said "yes, if it will help"...even knowing it is a burner.  This reflects to me how much pain she is truly in sometimes.  Thank goodness the worst is only at night and after she sits a long time.

For now, we will leave off the Humira and see if the combination of sulfasalazine and methotrexate will do the trick.  

Savannah will also have another MRI performed in December to check on the arthritis in her jaw.  Savannah has had more pain in her jaw lately (which she made me promise not to tell to her doctor), but when the doctor asked her point blank if she had any pain, she knew she had to tell the truth.
Here is how the conversation with the doctor goes:

Doctor: "Savannah needs another MRI on her jaw."
Me: "Okay, but can we do the MRI in Montgomery instead of Birmingham?"
Doctor: "No. There are only two MRI machines in the state that have the coil needed for this MRI procedure.  They are both at Children's Hospital in Birmingham." 
Me:  "But, Savannah has already had two sets of steroid injections to her jaw.  What more can be done?  I thought two sets were the limit?"
Doctor: "We might could do a third set, or we could do Remicade injections to the jaw."

Okay, now my wheels are spinning!  I have a JA mom whose daughter had Remicade injections to her jaw.  Though, it corrected one side perfectly, the other side of her jaw had tremendous overgrowth that will now have to be corrected with jaw surgery!

Me: "I don't want Savannah to have to have Remicade injections to her jaw."
Doctor:  "Well, do you want her mouth to only open wide enough to eat a small hotdog, because this could happen if the arthritis gets worse."
Savannah: "That's okay.  I don't like hotdogs anyways!" (:

Interesting things we learned that may benefit other Juvenile Arthritis families:

- Taking, both, sulfasalazine and methotrexate can have great benefits (or so the doctor says).  The two can work well together, especially if one has seen improvement with them when taken individually.

- When I asked the doctor if Savannah could take Embral (which is also a biologic, but not a burner when injected) instead of Humira, he said Savannah could NOT take Embral because of the Uveitis she has had in her eye...Embral can actually increase your risk of  Uveitis if one has had it previously.  

Regardless of it all, Savannah keeps smiling!  I watched Savannah run with her friends at school today and participate in a potato sack race!  This is something she could not have done just two years ago...prior to starting her medicines.  For this, we are so grateful.  It made my heart sing!
 God is good, all the time.  

2013 Jingle Bell Run Video - "Team Savannah"

Here is Savannah's 2013 Jingle Bell Run Video.  We hope you like it and it inspires you to want to walk/run with us.  Here is to hope and a cure for arthritis!

How to Join "Team Savannah" for the race or make a donation in Savannah's honor:

Go to (copy and paste to address bar):

http://JBRMontgomery.kintera.org/faf/search/searchTeamPart.asp?ievent=1069719&lis=1&kntae1069719=60F64DE88F1540C9B02098783F1C10B6&team=5592941&tlteam=5534388

Helping others is good for the heart.

Jesus teaches us to serve one another.  This can be done in many forms and fashions.  However, Savannah did something today that I wanted to share.

One of Savannah's long time classmates at school lost his mother to breast cancer a few days ago.  Savannah came to me (mom), with her money in hand, and said she wanted to order this boy a Duffy Teddy Bear from the Disney store online.  I immediately ordered it and it was delivered to our home yesterday.  She told the boy she had a surprise for him, and would be bringing it this morning.

Savannah rounded the corner of the school hall, wrapped bear in hand, where the boy was eagerly waiting outside the classroom.  I have never seen such a huge smile when he opened this gift...all because of a simple bear and the love and support that was behind it.  I hope his mother was smiling from heaven.

Sometimes children are truly the best examples.

Summer Ends - Pain Begins - Please, Pray for Savannah

Summer is drawing to an end.  This is my first post in a long while that is devoted to Savannah and her progress.  She has had a great summer...She was off all medicines and had manageable pain.  She went to Disney World, swam, had picnics, visited her grandparents and cousins, and just had fun!  Then one day (about ten days ago), the arthritis decided to consume Savannah's body again.  I knew the day would come, but one is never fully prepared for it.  Savannah has spent the last two days having to use a wheelchair on our errands.  It's okay, we still have fun, and we just take each day as it comes.

What caused the flare in her body???  Was it being off her medicines for 90 days?  Was it the airline ride to her grandparents?  Is it being brought on by the stress of starting school on Monday?  Nobody really knows. It could be all of these answers, it could be none of them.
At Savannah's request and her doctor's suggestion, we have started back the sulfasazaline drug. Another Biologic may soon follow, but we will cross that bridge if necessary.  More MRI's are probably coming to see the extent of the arthritis.

 Savannah's jaw is hurting badly, too.  She has already had two steroid injections to both sides of her jaw (the maximum allowed).  I am not sure what is next, here, either.

So, I am asking for prayer....Prayer that Savannah's pain becomes more manageable for the start of school and for everyday life.  Remember, Savannah has to use the arthritic hands to write...and write a lot.  We are thankful for her teachers who will do their best to aid her so she can try to keep the pace.

I (mom) am scared, but I try not to show it.  I will encourage Savannah to keep pressing forward.  We will dance in the rain when needed.

Along the way on such a journey, you meet some special people.  There is a lady named Jessica of Gracie's Gowns.  She has made a hospital gown for Savannah to wear when she gets future medical tests and treatments.  The fabric is of famous artwork (Savannah loves art!) and the gown has Savannah's name embroidered in the bottom right corner.  Savannah's face lit up when she received the gown! It is acts like this that make our journey a little easier.  Thank you, Jessica!
 www.graciesgowns.org

Facebook: Gracie's Gowns