Victory Over Juvenile Arthritis...Fighting Back and Praising God

Today is a long awaited post.  This post would not be possible without Savannah's prayer warriors.  Savannah played in her first JV soccer game...and they won, 8-0! However, the biggest victory is Savannah being able to play.  Just four years ago, Savannah was in a wheelchair on her worst days...the pain too bad for her to even walk, let alone run.  Through God and prayer, grit, and lots of determination...she accomplished her dream...playing soccer again. #nevergiveuponyourdreams

All smiles...ready for first game!

Some of Savannah's closest friends...living the dream together.

She made the JV Soccer Team!!!

God is bigger than Juvenile Arthritis!!!  Savannah made the JV soccer team at her school!  Thank you for your prayers!  It made a difference!

She is Trying Out for Soccer!! - Please, Keep Praying!

Your prayers are being heard.  She is overcoming FEAR with COURAGE and trying out for her school soccer team in October.  Please continue to pray, that if it is God's will, she will play again.  Juvenile Arthritis...God is bigger than you.

Juvenile Artritis (JIA/JRA) - Jaw Involvement - Helpful Information

To my readers of this blog:

One of the things I am contacted most about is information on jaw involvement with Juvenile Arthritis.  Let's face it, there is not a lot of information out there.  After one of my readers contacted me seeking more information, I looked to a couple of my fellow JIA moms for wisdom.  The following is from a mom who has a daughter with extreme jaw involvement.  Dr. Cron and Dr. Waite, mentioned in her writings, are located in Birmingham, AL.  They are believed to be some of the experts of this field.  I asked permission to share my friend's information in hoping it might help another family looking for any information concerning inflammation in the jaw with JIA.  My prayer is that it helps someone.  -Jenny Nelson

"My 17-year-old daughter was diagnosed at 14 with TMJ involvement, and Dr. Cron is her pediatric rheumatologist. She has had three aristospan (steroid) injections in her left side, and one aristospan injection in her right side. The injections helped, but the pain, inflammation and deterioration always return at some point.

Dr. Cron sent us to Dr. Waite for Remicade injections after my daughter's last MRI. Because my daughter has had several friends who had negative results from Remicade injections, she told Dr. Waite that she was not comfortable with that option at this time. Dr. Waite understood, and in fact, said he wouldn't suggest Remicade injections just yet because she is able to eat and the pain in her jaw is manageable. He recommended not doing anything at all until she has significant pain and/or is unable to open and close her jaw. When she gets to that point, he said he would do a procedure to "clean out" the joint, which he has found to be helpful in a lot of patients. He told her that she has several options besides Remicade, and that he is willing to work through those options with her.

I see that you mentioned that the latest results of this procedure do not match the positive/potential beneficial outcomes that were portrayed in 2013. It is my understanding that injecting Remicade into the TMJ began as an experimental treatment, and as such, the long-term effects of this treatment were unknown. Of course, every patient is different, and every patient reacts differently to medications, so some people have had positive results, while some have had negative results. If you have any doubts at all about the Remicade injections, I would suggest that you discuss them with Dr. Waite. He is very open-minded and willing to listen to your concerns and answer your questions."

FEAR FACTOR

"Once upon a time, there was a young girl named Savannah who LOVED to play soccer!  She would play five days a week for two teams at the same time when she could. Then, a monster named J.A. (Juvenile Arthritis) came along and swiped the girl's love for soccer away by causing tremendous pain in her feet and ankles.  The girl pretended it did not matter, but the girl's mother knew better. Years later, as the girl approached 7th grade, the girl pondered if she should play soccer again.  But, a new monster named FEAR tormented her."




Yes, Savannah has started the 7th grade and she loves school!  Her pain is still well managed with Sulfasalazine. It has not taken away all the daily pain...but enough.





FEAR is Savannah's greatest enemy right now.  After awakening in the morning, I have pushed Savannah from her bed, to the bathroom, then the couch in a rolling desk chair for going on five years.  I encourage her to get up and walk, but she is FEARful her feet will hurt too badly (morning stiffness) like they did years ago before her diagnosis and medicine.




Savannah has the chance to try out for her school soccer team this year, but FEAR is calling her name...just like it does each morning when she wakes up.

I ask you to pray Savannah can BEAT THE FEAR!!   Anyone else dealing with the fear factor??  If so, you are not alone.

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

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