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.

"God will not protect you through what He can perfect you."

I heard this quote this morning, "God will not protect you through what He can perfect you."  It struck me oddly, but then sort of made since.  I often wonder why God does not protect my child from the pain of juvenile arthritis, but He may be perfecting her for something greater in life.

Savannah has had a bad last few days...I think the weather change has part to do with it.  She just called me from school and said the pain was so bad today, that she was having a hard time just concentrating, along with having a hard time writing and walking.  I could tell she was almost in tears.  I told her to take some Tylenol I had left with the nurse, but she said she had already done that earlier.  She asked what more I could do for the pain...I said we could pray.  So I prayed God would lesson her pain and that she would make it through the day "the best she could at the pace she could."

I want to share something s dear friend wrote to me.

"God grants us what we need to survive if we just look above-it may never be a rose garden or what we feel we expect or even deserve.  Sometimes the journey that is not the normal, beaten path is the best path for us so instead of demanding a paved, beautifully manicured road, take the dirt road that leads to the most amazing scenes." 

I leave you with these thoughts, though I am not afraid to admit I feel Savannah and I are in a "pothole" on her dirt path today.  However, I must look for the beauty that surrounds.

Savannah - age two

No Pain in Heaven

Conversation with Savannah this week.

Mom: "Let's scooter down our hill, again."
Savannah: "My feet hurt too bad to go again."
Mom: "Just think, when we get to heaven, we will be able to fly around and play."
Savannah: "But mom, my wings will probably hurt if I do too much."
Note: Remember, this statement is coming from a child who thinks everything she does will eventually result in pain because of her arthritis.
Mom: "You think flying with wings will hurt?"
Savannah: (with big grin as a lightbulb goes off in her head) "Oh, yea!  There is no pain in heaven!"

A Very Good Day for Savannah...We'll take it!

Savannah has been doing gymnastics for her physical therapy the last six months.  It has really helped to improve her quality of life. We are thankful to God for good days.

Savannah is making a difference.

Savannah spoke in front of over 600 students at her school on Monday of this week.  She touched on her life with Juvenile Arthritis and encouraged people to run in the Jingle Bell Run on December 1.  Savannah's school then presented Mrs. Lisa of the Arthritis Foundation a check for over $700!  Whoo Hoo!!!
Savannah had an infusion at Children's Hospital on Tuesday.  It went much better.  One thing I think that really helped Savannah's infusion is that she drank a lot of liquids within 24 hours before she went for the infusion.  On the way to Birmingham, she drank a whole large container of Gatorade (at her Juvenile Rheumatolgist's suggestion).  We had to stop twice to go to the bathroom off the interstate, but her veins were better for the stick (but, the nurse still had to search real hard for a good veun, I admit).  However, only one stick!  Praise God!  So try the gatorade thing before your next infusion/blood draw if your veins are worn out like Savannah's veins.
Savannah also gave an interview to Children's Hospital on Tuesday.  They are going to use her face and story for some of their literature.  Toss a pebble in the water, and see the ripple effect!
God continues to use Savannah to help others that suffer with arthritis.
Savannah has another MRI in the next few weeks...this time to look at her ankle and foot.  She is still having a lot of pain when walking for just a short while, despite all the medications and new orthotics from the Physical Therapy department.    Keep praying!!!

You can still sign up to run the Jingle Bell Run in Montgomery on December 1!  Search for Jingle Bell Run, Montgomery.  Then, look for Team Savannah...We would love you to join us!!!