Savannah wishes everyone a Merry Christmas and a Happy New Year!

Thank you for praying for me.

P'zazz Art Fundraiser for the Arthritis Foundation

Savannah loves P'zazz Art Studio in Prattville, AL!

Some of Savannah's school classmates and teacher.

Okay, had to share this.  Savannah has been taking art classes (during summer breaks) from a talented lady named Kasey for about four years now.  Savannah loves Mrs. Kasey!  Anyways,  Mrs. Kasey held a very special art class where she gave part of the proceeds to the Arthritis Foundation...$600 to be exact!  It was a fantastic event!  What a blessing.

Running the race...one step at a time.

Well, we made it through the Jingle Bell Run for the Arthritis Foundation.  Savannah did a great job as the honoree with the run having almost 1,500 participants and raising over $91,000!  This run was the most successful in the history of Montgomery Jingle Bell Runs!  God is so good.  Wow, think of all the research and people that can be helped!  Hopefully, a cure is in the near future!  Thank you to everyone who supported Savannah financially, emotionally, physically, and through prayer.

Here is the latest on Savannah and her "journey with arthritis".  She continues to have good days and tough days. The colder days and weather changes are hardest on Savannah. Though, the good days far outweigh the bad days, thanks to the medicines.

Savannah's rheumatologist is changing her medicine up some.  Instead of doing a weekly Methotrexate shot, she will now take 500mg of oral sulfasulazine twice a day, every day.  This is an older medication and the doctor is still trying to figure out the right combination of drugs that will give Savannah the most benefit.  Savannah will continue with her Orencia infusions at Children's Hospital every four weeks, as well.  So the good new...no more weekly shots for now!  Whoo Hoo!

Savannah (in blue shoes) running the Jingle Bell Run with her friends,
one step at a time.

T.V. Interview -WSFA Montgomery

Savannah spoke on WSFA 12 News about the 2012 Jingle Bell Run and her life with Juvenile Arthritis.

T.V. Interview -WAKA

Savannah was the voice for children around this country who suffers with arthritis.  She did a great job with her t.v. interview today.  God is using Savannah to touch other peoples' lives.

From the Voices of Families....

First off, know the following entry is from a new friend of mine that God brought to me (she gave me permission to share).  Her son has juvenile arthritis (like Savannah's, but more severe) and this is how I came to meet this wonderful lady.  Beware, the following information is powerful.  To view blog where this information originally came from, go to:

http://purpleplayapower.blogspot.com

                                                                               -Jenny (Savannah's mom)

From the Voices of Families….

Recently I asked families of children with Juvenile Arthritis, if there was 
anything they wanted the general public to know about JA what would it be…
This list below is a paraphrased summary of their very heartfelt responses.  
Just a window into the lives we live, thoughts we have, and strength our 
children possess.  From the voices of families…

·         Juvenile Arthritis is not an old person’s disease, it’s autoimmune

·         It affects internal organs, not just joints

·         Our children are not “fine”, just because you look good or are smiling

·         It hurts, even when smiling

·         It is more than just hurting joints

·         It affect joints AND muscles, skin, internal organs, personality, mood, 
emotions, and engagement/activities with others

·         It can be as bad as cancer…just because my child is not bald 
doesn’t mean he/she is not suffering

·         Kids do not always grow out of it when adults

·         Kids’s with JA can be as severe and worse than adults’ RA

·         There is no cure

·         It is not an old person's disease - it is an autoimmune disease!

·         it affects more than our children's "health"...it affects school, their 
relationships, their play, their quality of life...

·         it can attack anyone, at any time and we don’t know why

·         during one hour of the day they can look fine, and an hour late it can 
hit them hard

·         it can blind, cause deformities, and even kill

·         it does not discriminate

·         We also don’t know what these drugs will do to their bodies down 
the road.  Will they be able to have children?

·         It affects not only their health.  It impacts their school, relationships, play, 
and quality of life

·         Praying for relief so my child can live a normal life…for some this comes, 
for others it takes much longer, and yet others continue to have 
bumps in the road and struggle.

·         If the cure was spices, vitamins, and other crazy mixtures, all these 
children would already be cured

·         The roller coaster ride is never ending…bad days, good, days, 
emotions, doctors, stress, expenses, meds, remission, 
active disease, medicated remission, …and yet life continues 
to go on and we try to enjoy life and a happy childhood.

·         We do everything we can to let our children be children

·         It is not the same as grandpa’s arthritis, which is osteo….
this is autoimmune and my kids may be cute but they hurt BIG time.

·         When people think our kids are fine and question our requests 
for prayers because they look fine, it is hurtful.

·         Brothers and sisters become fearful, emotional, and wonder if they 
too will get this.

·         The amount of chemo our kids use over their life-time is more 
than some cancer patients

·         You see my child smiling…I see my child when he/she cries, 
gets blood work, can’t sleep, goes through physical and occupational 
therapy, sleeping with splint on their wrists/ankles, getting 
ongoing IV’s, getting MRI’s, CT scans, xrays, joint injections, 
scopes, surgeries, shots, throwing up, in pain, with swollen 
joints, with fever, with rashes, struggling to walk, and yes…I
too see my child smile and am so thankful that through it all 
he/she finds a smile.

·         It affects every child differently.  It’s an autoimmune disease 
and can be mild to severe and chronic and can be different 
from day to day

·         It strains a marriage, couples, relationships

·         It’s hard to balance between children

·         We advocate, educate…so others will begin to understand

·         We experience many financial burdens

·         It is hard to admit that I can’t “fix it”

·         A normal life is a struggle

·         Our kids miss out on things that their friends are doing, either because 
of their health, because of treatment, or because they cannot be 
around others with a flu due to a compromised immune system

·         There are over 100 kinds of JA

·         It affects our careers/work

·         It comes out of nowhere…one day you have a healthy kid, 
then you don’t

·         Some children are old enough to understand the 
seriousness of their disease…and the young ones who don’t 
understand are also scared

·         The continual fatigue is the hardest

·         This disease steals “time” from all of us…

·         My child is losing their hair…and prior to her losing her hair, people 
didn’t realize how serious this disease can be.

·         We often hear…at least it isn’t _____...but hearing this does not 
make this disease better to families who live with it because it is 
affecting our beloved children.

·         This affects the whole family….these are our children...
It's a full on battle everyday!

And yet through it ALL…our children

·         Endure it all

·         Are incredibly brave

·         Know a lot about compassion

·         Experience the depths of love

·         Are amazing

·         Are young

·         Want validation

·         Need encouragement

·         Want a voice

·         Do know how to have fun

·         Are overcoming tremendous obstacles

·         Are thankful for each other

·         Are blessed to have incredible strength

·         Can smile

·         Have a much better chance with better drugs…but 
more research is needed

·         Are strong

·         Hope for a cure

·         Want you to tell someone…everyone…raise awareness…please…

Jaw Injections - Other Options (for Anonymous)

My sweet readers, 

Please bare with me as I address a post that an anonymous reader left. I (mom of Savannah) have been blessed to come in contact and become friends with other JA (Juvenile Arthritis)  moms who deal with huge issues of arthritis in the jaw with their children.  

Here is the comment I wish to address :

"Hi my daughter also has Polyarticular Juvenile Arthritis. She has had it for about 6 years but only had a diagnosis 18 months ago. She too has it in her jaw but unfortunately as it was not picked up she now has sever damage to her lower jaw joints and her only option to correct this is surgery. She is 15 and is struggling with comments made about her small chin, She is very beautiful but it is a cruel world out there. She has also had Steroid injections in her jaw and other joints and does not like it, she is on Methotrexate. We are in the painful process of trying to make the right decisions about the surgery that lays ahead, this is such an awful disease! i pray for Savannah and hope that you have caught it in time to save her from the painful surgery, keep up with the Steroids and treatment it is worth it if it works" xx  signed, Anonymous


Dear Anonymous,

I have two JA moms/friends that are dealing with this exact situation.  The arthritis in the jaw has caused permanent damage to both JA girls, but they have found other treatments that have worked without the surgery. One has done Remicade injections to her jaw, every 4 weeks, for a total of three or four injections.  This "regrew" the bone in the jaw.  This is a cutting edge treatment, and still in experimental stages. It actually caused a little too much bone growth, but they are hoping jaw exercises/therapy will correct this without surgery.  Also, TWO sets of steroid injections, at least six months apart, are done to the children in Birmingham with much success...though after two sets, if not better, the Remicade shots to the jaw or surgery is next.  

Savannah and I will be praying for you and your daughter and the decisions ahead with her jaw.

I hope this information helps "annonymous" and others in the same boat.  Savannah and I created this blog to raise awareness, share information, and encourage others.

Savannah after second set of streoid jaw injections.