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

We Thank God for Great Teachers!

Savannah has been blessed with some wonderful teachers through her journey with Juvenile Arthritis.
Without these wonderful teachers, Savannah's journey would have been much more difficult.  They encourage her, pray for her, and make concessions for her when her hands can't write anymore. So, though most of our posts are mostly about Juvenile Arthritis and Savannah's progress, this one is mostly dedicated to the wonderful teachers of the world.  We love you.  Thank you for all you do.

 4th grade teacher

 3rd grade teacher

Going BLUE for Arthritis Awareness!!!

"The Arthritis National Research Foundation & The Blue Ribbon Project's Grand Prize Winner of the Go Blue Challenge goes to Savannah Nelson, who went above and beyond, showing herself draped in Blue from head to toe Congratulations, Savannah, you look great and are doing an awesome job showing arthritis awareness!

Savannah you ROCKED IT!! It was a unanimous vote that you had to be number one! WAY TO GO!!"

Taking the lemons of life and making lemonade!...Or are we taking blueberries
and making a blue smurf!!!  Anyways, hope this makes you smile.    

Huggable Heroes

God continues to open doors for Savannah to share her journey with Juvenile Arthritis.  She is one of 80 national semi-finalists for the Build-A-Bear Huggable Hero award...but, the true heroes are all the children with chronic illnesses who continue to fight, and find strength in their struggles.

2013 Montgomery Arthritis Walk

Savannah with some of her friends...3 out of 4 of these girls have arthritis.
"Remember. you were given this life because you were strong enough to live it."

Savannah, Savannah's mom, and Reese...walking to make a difference in the lives of those affected by arthritis.

Savannah's JIA Journey ...From the Beginning

People often ask about Savannah's diagnosis with Juvenile Arthritis...how 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.”

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.

Savannah and Reese, The "Ripple Effect"...Two Girls with Juvenile Arthritis & Hearts of Gold

Meet Reese.  She is four years old and has juvenile arthritis like Savannah.  She is the little girl Savannah has been mentoring (see "101 Shots"- blog entry).  These two girls have a special bond because of their illness...but, it goes so much further than that.  Savannah reads to Reese's K-3 class every few weeks and brings them a special treat of cupcakes or cookies.  They love that!
Reese shares with Savannah when she receives her weekly shots without a tear and Savannah cheers her on!  Savannah takes Reese special band-aids, to put over her shot sites, when Reese runs out of them.  The stuffed dog in the photo, well they practice giving shots to him (poor pup).   They walk this journey, together, and I am so glad they have each other.
Sometimes, I wonder why God would allow Savannah to go through the trial of a chronic illness such as juvenile arthritis...but, then, Reese came along with the same diagnosis and it all starts to make more sense.  Savannah helps Reese, Reese will help someone else, and so on...the "ripple effect".  The trials of getting ice cream on your clean shirt or your hair combed just right doesn't seem to matter anymore. Knowing you have someone to share your triumphs and fears with, and understands what you are going through... well, that is priceless.  Watch out for the ripple effect... What!  You are caught up in it already!

101 Shots - Helping a Child Face Shots for the First Time - A Mentoring Story

I know what you might be thinking...101 shots???  What does that mean.  In the end, you will see.

I am sharing a true story about something that happened with Savannah this week.  She was faced with the opportunity to help a three year old child who had recently been diagnosed with Juvenile Arthritis.  The three year old girl is named Reese, and she is precious.  However, like most other kids with JA, Reese's doctor said she had to start receiving weekly shots for her arthritis in order to keep it from progressing.  But, how does one go about this?...How does one make a young child understand she has to be given shots in order to walk, or write, or just function as an average child?  How does one prepare a young child for this?  Truly, there is no simple answer. Yet, God worked through 10 year old Savannah to help Reese prepare and better understand about her shots and living with Juvenile Arthritis.  Want to know how?!?

Savannah set up a stuffed animal hospital.  You see, Reese came for a "play date" with Savannah where they took turns examining their stuffed animals, looking in their animal's ears with a light, checking their reflexes, using tongue depressors, the works.  Savannah even showed Reese how the stuffed bear got a shot for her pain.  Then, Savannah gave herself a shot to further show it was not such a big deal.  Then, cool band-aids were distributed and even reward stickers! Reese looked at all of us and said very boldly, "I am ready to get my shot!" As Reese said goodbye, she took with her a gift from Savannah...A pink basket filled with the stuffed bear they practiced shots and medical treatment on, cool band-aids, and fairy reward stickers.  The next day, the day Reese was scheduled to receive her first Methotrexate shot,  she received the shot like a champ...well, after her dad gave her bear (the one Savannah gave her) 100 "pretend" shots...Reese's shot was number 101!

So, whether it is shot #1 or shot #101, Reese is still our hero.  She is brave.  She is courageous.  Besides, if Savannah and the bear can do it, so can she!  I am so glad God worked through Savannah to mentor this precious, beautiful girl.

Savannah's classmates encourage her while she is at Children's Hospital.

Savannah's fourth grade class...such a blessing.

"Playing with my bear...Just giving it an I.V."

I had to laugh to myself when I saw my daughter had said up a infusion station for her new teddy bear. Yes, most kids are playing "house" with their stuffed animals.  Savannah, she is the nurse tending to her bear's needs...an I.V. infusion, some band aids, etc.  Notice the "I.V. fluid bag" hanging from the lamp with it's tube/string running to the bears arm.  The bear even sports a medical bracelet.  A glipse into the life of a child with a chronic disease.  Thank goodness, she makes the best of it.  Who knows -Maybe she will be an infusion nurse one day!

Painting - "For Savannah"

A local Montgomery artist painted this picture of Savannah this week.  She is two years old in this picture and walking along a garden's edge in Georgia.  When I see this picture, I see a "care-free, pain-free" girl...no arthritis anywhere in her body (though she could have had arthritis then, and we did not know it).  I am very thankful to the artist, Barbara Davis, for painting this beautiful picture of Savannah.  I will always treasure it.

The flu has arrived...but, she still smiles.

The flu has come to visit Savannah in a BIG way!  New Year's Eve, she came down with a mild fever. We took her to the doctor New Year's day (Urgent care, because regular pediatrician was closed New Year's day).  Well, because Savannah's fever started out mild...around 99 degrees the first twelve hours of onset, the doctor said it could not be the flu.  She tested for strep...negative.  So the doctor chalked it up to it being an upper respiratory infection, prescribed an antibiotic, and sent us on our way.  Well, Savannah's fever shot up to 103 degrees after another twelve hours past.  It stayed between 102-103 degrees the next two days.  So, we visited the regular pediatrician yesterday.  She tested for flu, and (you guessed it) she was positive.  Antibiotics do not help the flu and we were now past the first 48 hour mark for prescribing Tamiflu.

I have a question for other parents who have children with juvenile arthritis and whose children are on medicines that suppress the immune system...

Do you get the flu shot for your child each year?

I have mixed feelings on the flu shot.  In Savannah's case, she has type 2 of the flu, and the shot was for type 1 this year...so, it may not have even helped. Still, God is good, all the time.

Even with the horrible flu, Savannah still smiles.