Thursday, December 13, 2012

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.

Wednesday, December 12, 2012

Running the 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 more weekly shots for now!  Whoo Hoo!

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

Monday, December 3, 2012

T.V. Interview -WSFA Montgomery

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

Wednesday, November 28, 2012

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.

Saturday, November 17, 2012

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:
                                                                               -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" 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…

Wednesday, November 14, 2012

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.

Tuesday, November 13, 2012

"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

Friday, November 9, 2012

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!"

Saturday, November 3, 2012

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.

Friday, November 2, 2012

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!!!

Monday, October 15, 2012

Savannah keeps going...despite some setbacks.

Savannah is having a bit of a flare up.  Her hands are hurting more lately and her feet/ankles are hurting  after walking just a very short distance.  We went to an outdoor mall on Saturday.  Her feet were hurting so badly, we had to bring out the EZ Rider wheelchair.  I am very thankful for this EZ Rider, but saddened we are back to needing it.  Savannah has new orthotics coming this week (hopefully) and maybe this will help with the pain in her feet and ankles.  I wish I could give Savannah my feet.
Her hands...well, she manages the best she can.  I watched as one of Savannah's classmates completed a writing assignment the other day.  He wrote with ease, word after word.  I have never seen my daughter able to do this task in her life.  It has always required tremendous effort for Savannah to write. I wish I could give her my hands.
Despite it all, Savannah keeps going.  She keeps smiling.

Saturday, October 6, 2012

Savannah "Stand Up to JRA" - Video (Updated)

Here is the newest video for the Montgomery Jingle Bell Run.  A few of the pictures are from Savannah's jaw steroid injections last week.  I hope the video motivates you.

Thursday, October 4, 2012

Savannah keeps moving!

A nice photo to share...taken yesterday at gymnastics.  Savannah keeps moving!

Savannah has an eye appointment tomorrow.  Please pray there is no eye inflammation present. 

Saturday, September 29, 2012

Crocodile Tears

Well, yesterday I officially experienced the worst moment in my life.  I debated whether to share about it on the blog, but yet, this is why this blog was share Savannah's journey.  Savannah's first two doctor's appointments went well.  Savannah has no additional bone erosion in her feet and the arthritis is staying in check, thanks to the medicines (and prayer).  Savannah got fitted for new orthotics at her second appointment and we LOVED the new physical therapist who fitted her...Also, we think the new orthotics will be tolerable to wear! Praise!
Oh, but the third appointment...time for Savannah's Orencia infusion she receives every four weeks.  Savannah has had twenty i.v.'s inserted since one year ago. Most have gone well, others tolerable... until yesterday.  Since Savannah has had to receive so many i.v.'s in the last year, her veins in her arms are pretty much shot.  Without going into a lot of details, it took three nurses and three separate sticks to get a good vein to insert the medicine...with each stick being excruciating because the nurses had to move the inserted needles around a lot to find a good vein without scar tissue.  Savannah's pain tolerance is good, but the pain of these sticks were more than she could tolerate.  The tears flowed, she begged the nurses to stop, she begged for me to take her home.  The nurse told Savannah if she did not get the medicine, the arthritis pain would come back and she would be back in a wheel chair.  Savannah said she did not care...the pain was that bad.  On the third stick, as three nurses hovered over Savannah,  Savannah is screaming in pain, crying in fear, and saying "No more! No more! Please stop!"  All this as she looked into my eyes, the person who is suppose to protect her and take her fears and pain away.  I start singing her the song I have sang to her since she was born..."You are my sunshine, my only sunshine..."  By now, streams of crocodile tears are rolling down my face, too...but I continue to sing looking straight into her pained eyes.  After an hour of trying to stick her and attempting to find a good vein in either arm, one of the nurses finally found one good vein deep within her arm.  My singing stops, the fight is over, the medicine is ready to enter her body.  I don't know if I can do this any more.  You can put the pain on me, stick me!...but, not my child!  However, I am reminded of a man (Jesus) who was stuck and struck beyond measure as His father watched.  God I need your strength. Friends, I need your prayers.  Today is a new day...a calm at the end of a storm.  And I will still say, God is good, all the time.

If you would like to make a donation to the Arthritis Foundation in Savannah's honor, or to run on "Team Savannah" at the Jingle Bell Run benefiting the Arthritis Foundation, go to (you will probably need to cut and paste address):

Thursday, September 27, 2012

Savannah spoke at the Jingle Bell Run Luncheon for Arthritis...She touched many lives.

Savannah speaking from her heart.

All of these people are waving off arthritis!
There was quite a crowd to hear Savannah speak.
Savannah spent her lunch today speaking in front of over a hundred Montgomery citizens and business people about raising money for the Arthritis Foundation.  There were a few tears shed and a round of applause at the end of her speech.  I am so proud of her...and this is all after just getting steroid jaw injections 24 hours earlier!  Wow!  God is good, all the time.

Wednesday, September 26, 2012

Second Set of Jaw Injections...DONE!

We left at 4:30am this morning to travel to Birmingham for Savannah to get her second set of steroid jaw injections.  It went well, and the doctor said her jaw movement looked good (Praise God!).  Now, that is done, and we can look forward to speaking at the Montgomery "Jingle Bell Kick-Off" luncheon tomorrow.  Thank you for all your prayers. We have made it through another "pothole" in the road of life with juvenile arthritis!  I am looking forward to a smoother road ahead.

Friday, September 21, 2012

Read this POST!! Savannah's Juvenile Arthritis...The Real Truth

Lately, I have heard some people say,

"Well, she doesn't look sick."   Or...  "It doesn't look like anything is wrong with her."  Or..."She never complains. She must not be having any trouble with her arthritis."

Okay, let me clear up some things in this post.  First off,  Svannah is doing MUCH better compared to a year ago, or even six months ago.  However, Savannah's improvement is a result of a lot of powerful medicines she has to take...Infusions every four weeks at Children's Hospital in Birmingham and shots every single Friday.  The medicines are allowing Savannah to be a normal run, to play, to walk normal, to write in school.  What you don't see with her "normal life" is these medicines "behind the scenes".  The video below gives you a glimpse into what it takes for Savannah to be a normal kid.

* Does Savannah still hurt even after all the medicines?

Yes.  She still wakes up every morning and has to be pushed around in a rolling desk chair because her feet and ankles are so stiff.
She still has trouble writing, though she is better with this since starting the medicines.  However, she is still one of the last students to finish her writing assignments because it takes such effort to write with the arthritis in her fingers.
After a period of time walking/running, Savannah's feet start long before my feet or most anyone else's feet would hurt from walking/running...or even standing.

* Why put Savannah on such powerful medicines?

Because the pros of being on the medicines far outweigh the negatives.  Plain and simple answer.

* How long will she have to take these medicines?

Indefinitely...or until they stop working.

* Can Savannah go into remission?

Yes.  Anything is possible, especially with prayer.  However, it is not likely because of the severity of the onset of her arthritis and because it started in multiple joints.

I hope this information helps clear up some things people have been wondering.  The video above will give you a glimpse into what is going on, "behind the scenes" as Savannah's journey in life continues.  AND...If Savannah doesn't look sick to you....GREAT!  She just wants to be a normal kid the best she can!

Tuesday, September 11, 2012

Soft foods ONLY for this girl!

Jaw pain is getting worse every day.  We are down to eating ONLY soft foods which means...

breakfast: oatmeal or muffin top   
lunch: soup, watermelon or applesauce, and pudding   
dinner: more soup or something equivalent

Jaw surgery, to get both sides of jaw injected with steroids for pain and to hopefully stop the arthritis in the jaw, is set for September 26.

Thursday, August 23, 2012

Second set of Jaw Injections...In the near future.

Picture of Savannah before her first set of jaw steroid  injections.

Savannah has arthritis in her jaw...both sides.  This causes her jaw to hurt, and can eventually cause permanent damage if not treated.  She had steroid shots injected into her jaw this past January (2012) in the hopes it would take care of the arthritis.  She had a follow up MRI about three months ago.  It showed some of the arthritis still present.  Savannah's Rheumatologist said to "watch and see" if the pain in her jaw got worse and more frequent...and if it did, Savannah would have to get another set of injections in her jaw.  Well, Savannah HATED her first set of injections worse than anything else she has encountered with her arthritis.  SO, when I told her what Dr. Weiser said, she said she was keeping her pain to herself.  I have seen her grimace more and more frequently the last several weeks. So, she comes to me last night and says, "Mom, we need to have a serious conversation. "  I am thinking, "Huh?!"  She continues,  "It is time for the jaw injections."  The pain must be super bad.  So, here we go again!  To be continued...

Thursday, August 16, 2012

New school year...same attitude.

Sorry I have not posted in a while.  Savannah started the fourth grade one week ago.  Things started out well...great teachers, great school, new beginnings.  Though Savannah has made much improvement from one year ago (she was diagnosed one year ago this month), the old arthritis pain in Savannah’s fingers just refuses to go away.  A writing assignment, she could not finish in class ,came home today for homework...”Mom, I had to take a lot of breaks while writing today.  The pain was bad, but I did the best I could.”  She finished the seven sentence assignment at home, taking many breaks to stretch her fingers, fighting through the pain.  However, one year ago, Savannah could only manage 17, she can manage 17 words.  We are thankful for any and all victories.  We are thankful for patient and understanding teachers.  We are thankful for good medicines.  Savannah takes her 55th Methotrexate shot in the morning.  She will take her 15th Orencia I.V. Infusion at Birmingham Children’s Hospital in a couple of weeks.  The pain is still there in most of her body, but more manageable.  Also, we have a new attitude.  We only complain if it is really bad.  If you can’t say something nice, say nothing at all.  We dance in the rain.
More to come...keep praying.  Savannah will keep fighting!

Tuesday, July 17, 2012

Arthritis has its blessings.

Did I catch you off guard with the title of this entry?!!  Arthritis has its BLESSINGS.  REALLY??!!
I have to tell you that when Savannah got diagnosed with Juvenile Arthritis almost a year ago, I went online to find out as much as I could on this disease.  I especially liked the blogs on people’s personal journeys with juvenile arthritis...they really gave me a lot of insight.  However, I do find it disheartening that so many blogs, about any kind of trials, are filled with such doom and gloom.  Okay, Savannah hurts, every day, and there is no cure for juvenile arthritis (at this time).  Yet, a good friend of mine, who had juvenile arthritis as a child and who now suffers with rheumatoid arthritis and a host of other diseases as an adult, recently reminded me of the positives of Savannah having this disease.
  My friend wrote:
 “Again, I remember the loneliness and sadness of feeling different and not getting to do what other kids my age could do when my illness hit full fledge when I was young. Out of about 40 in the church youth group when I was young, I am only of about 5 that stayed faithful.  One of the reasons I did was because of my illness.  I was so thankful to be alive and I had done so much praying that I held on to God for all I was worth.  Kids that struggle for whatever reason when they are young and have parents that point them to God for encouragement, never forget their walk.”  
I hope these words uplift you as they uplifted me.  God is in control, good or bad, pain or no pain, and we must look for the blessings and help our children see the blessings.
Savannah is presently taking gymnastics four days a week and is doing great with it!  Yes, she still has pain, but she pushes through it and she can do it!  We praise God she is doing as well as she is doing and continue to pray she even gets better.
So, count your blessings...they are out there...sometimes you just have to have a friend to remind you.

Monday, June 25, 2012

Savannah still smiles, despite some potholes!

First off.... YEA!!!!  Savannah got her new Convaid EZ Rider to help her when the arthritis in her feet is too much to bear.  Thank you Convaid for making such an excellent mode of transportation!
Savannah's most recent tests have been mostly positive.  She had an ultrasound to her ankles and feet two weeks ago that showed some minimal arthritis and some bone deterioration to her toes.  The rheumatologist is having us go for another ultrasound in three months to see if the bone erosion is better, the same, or worse.  If it is worse, a CT scan will then be done to determine if her form of arthritis if causing excessive bone deterioration  and medicines will be switched around again.
Savannah had a jaw MRI this past Monday along with her four week Orencia infusion.  The jaw arthritis did not look too bad, so additional steroid shots are not needed at the moment.  If Savannah's jaw pain worsens and becomes more frequent, then we will have to look at a second set os steroid shots to her jaw.  However, all in all, good news.
Her Rheumatologist wants custom orthotics made for her feet in hopes of helping with some of the pain.  The insurance does not want to pay for this unless she has diabetes.  I told the insurance company Savannah could not walk part of the time due to foot pain from juvenile arthritis.  So, now, I am having to get Savannah's doctor to write a letter to the insurance company explaining why she needs the orthotics along with sending her medical history.   My phone calls had phone calls today!  Still, God is good.

Please pray Savannah will see more improvement with her joint pain in the coming months, that her jaw pain does not get any worse, and that her bone erosion improves.  These are what I need for her more than anything.

Savannah is taking gymnastics twice a week...she really loves it...but, it takes all she has to do it.  We are doing this for her physical therapy.  I guess one additional prayer would be that she has the desire and strength to keep up gymnastics.  Her joints need worked and strengthened.

God continues to bless me (mom) every day.  The sun shines, the wind blows, and the birds sing.  

Thursday, June 7, 2012

Savannah keeps smiling!

Just a short update. Savannah had an ultra sound done on her feet and ankles last week in Birmingham. The doctor saw some arthritis in her achilles tendon area and some permanent damage/deterioration in her toe bones (damage that was probably there before she started treatment). Savannah still struggles to walk when she first wakes up in the morning, but she manages by rolling around in her desk chair (which she uses until her feet and ankles loosen up from the morning arthritis stiffness). She has another Orencia infusion and a follow up MRI on her jaw in a little over a week. We are thankful for the improvement we have seen on the medicine. We continue to take one day at a time and to enjoy life despite the obstacles. Thank you God for leading the way.

Wednesday, May 16, 2012

Savannah's New EZ Rider!

Savannah is getting a new EZ Rider to aid her when she has "flare ups" with the arthritis in her feet and ankles. Though Savannah is improving, there are still times she cannot walk. It is a Convaid EZ Rider. It looks just like the one in this picture, accept hers will be teal in color. Savannah and I like it because it does not look like a baby's stroller (too young looking), but it doesn't look like a wheelchair (too old looking). It folds to fit in my car trunk and I know it will aid Savannah for many years to come. Yea!! No more of me having to carry Savannah on my back (did you hear that, mom?!). Again I say...God is good, all the time.

Monday, May 14, 2012

Teatment for JRA/JIA -What has worked and what has not worked.

This post is for anyone dealing with juvenile rheumatoid arthritis or anyone just wanting more information on this disease and its treatment. Medicines Savannah has taken or is currently taking: Methylpred (Steroid) -Savannah has been on this medicine, twice, for 10 days. Worst medicine on Earth as far as side effects. She acts crazy, throws tantrums, turns as pale as a ghost, and just feels all around horrible on this steroid. It did very little alleviating her joint pain, too. Methotrexate (chemo drug) -This is taken in shot form weekly. It has helped with Savannah's joint pain some. It is not a "burner" (thank goodness), but can hurt sometimes at injection site. Savannah usually has a bruise, at the injection site, for a few days after the shot. Side effects: headaches, upset stomach occasionally. Remicade (biologic drug) -This is a medicine given by infusion (I.V.) every four weeks. It takes about four hours for the infusion. Savannah saw some improvement on this medicine, but not enough. She had a major flare on this drug after fifth dose, so she was removed from taking Remicade. Side effects: None. Orencia (biologic drug) -This is a medicine given by infusion every four weeks. The infusion only takes about an hour and a half. Savannah has seen her best improvement on this medicine. Side effects: awful congestion about two days after infusion (lasts a few days), headaches. Diclofenac - Used to help with joint pain. It did not help Savannah at all. Naproxen -Used to help with joint pain. It had no effect on Savannah. Celebrex -Widely known medicine to help arthritis pain among adults. It has just recently been approved for children. It did not help Savannah at all, though it greatly helps my adult brother who has adult rheumatoid arthritis. Folic Acid - Taken daily by Savannah to help keep the Methotrexate from hurting Savannah's liver function. Side effects: None. Helps with upset stomach from taking Methotrexate. Juice Plus (vitamin) - Savannah has taken this, daily, for almost five months. She has not gotten sick, once, since taking it...even though she has an extremely compromised immune system due to the medicines she takes. Side effects: None. Strongly recommend. In the past nine months, Savannah has had to go to Children's Hospital/Birmingham FIFTEEN times for appointments, treatments, and procedures. This is an almost two hour trip one way. Is it worth it...YES!!!! It is important to note that everyone is effected differently by medicines/treatments. What works for one, may not work for another and vise versa. We hope this information is beneficial to you.

Thursday, May 10, 2012

Savannah speaking at Arthritis Walk in Montgomery

Savannah spoke at the Arthritis Walk in downtown Montgomery recently. She did a great job! She wrote her own speech and spoke from the heart. She is trying so hard to raise awareness about her condition.
. The children standing next to her all have Juvenile Arthritis, too. In fact 5,000 children in Alabama, alone, have Juvenile Arthritis! Please pray we can find a cure.

Wednesday, May 9, 2012

Savannah is our hero!

Savannah just finished a four week session of gymnastics at our day a week for one hour. She missed one of the four week classes. She was too congested to go...a side effect of her Orencia infusion that particular week. Savannah slept only two hours one night, the congestion was so bad. This, in turn, caused her to miss “Field Day” at school...her favorite day of the school year. Oh, well. At least she did not miss any tests or school work. If one was to look at her, you wouldn’t guess the girl on the balance beam has juvenile arthritis in nearly every joint in her body. You go girl!!! Praise God for such accomplishments! Savannah had a flare up over this past weekend. We are not sure what caused it, but she basically could not walk for 24 hours straight. I carried her on my back when the wheeled desk chair was not available to use. At one point, I carried her on my back to the women’s restroom at church. She had to go to the bathroom and her feet and ankles would not cooperate. What a site! Me carrying Savannah on my church dressed body complete with a big hat! I think my dress was hiked up to where half my slip showed! Oops! We won’t post a picture of that (I don’t have one, anyways...thank goodness!). Savannah has been complaining of her jaw hurting more and more lately. This is not a good sign. An MRI on her jaw is scheduled for next month. A second set of steroid shots to the jaw may be in her future...but, hopefully not. Savannah’s spirits remain high despite everything. One of Savannah’s closest friends wrote her a letter this week, encouraging her to never give up. She also said she would always be by her side through it all. What a blessing friends like that are in so many ways. Our neighbors, a few doors down, sent us a note that she and her two young boys pray for Savannah on a regular basis. It is things like this that keep Savannah motivated to not give up! Thank you, everyone, for all your prayers and encouragement. It makes a big difference.

Thursday, May 3, 2012

Savannah's fight against JRA aired on local news!

A news story aired this week featuring Savannah’s life with Juvenile Arthritis. You can watch it at the following link (you will have to copy and paste it to your search bar...I am not too good on computers):  

Tuesday, April 24, 2012

Gold Metals and a Tiny Blue Bracelet

Look closely at this picture of Savannah running. What do you see??? You may notice her legs are moving in a very slow running position. You may notice the girl beside her (Hope) walking and pointing. You may even see a tiny blue bracelet on Savannah’s right arm. Now, the story behind the photo... The picture is of Savannah and her good friend Hope. A 5K race was being ran that morning in honor of the local elementary school. Myself, my husband, and Hope’s siblings ran the 5K while Savannah stayed behind and gave out water bottles as the runners finished. Then, something amazing happened. Savannah decided to try to run the 1 mile fun run after the 5K was completed. I thought silently, “no way will she make it with those arthritic feet and ankles.” I decided to run with her, so to pick Savannah up when she could go no more. Now, here is the rest of the story..... Savannah ran the whole mile! Did she hurt...yes. Did she “feel” like quitting...yes. Yet, she kept putting one foot in front of the other, saying, “I must run this entire race and finish!” The last 100 yards, I fell back and let Savannah’s friend Hope walk beside her and encourage her to finish the race....and Savannah’s feet keep “running”. We all were given gold medals at the end of the race. Hope’s metal was for her winning the 5K in her age group (way to go, girl!). Savannah and my metals were smaller and plastic, but it showed we finished the 1 mile race....YES, Savannah finished the race! And, as for the small blue was given to Savannah the day before the race, from Savannah’s gymnastic’s coach, for giving the most effort in her gymnastics group! Now, who says you have to come in first place to be a winner! Savannah, you continue to amaze me and be my hero! (You go girl!)

Friday, April 13, 2012

Cute swimsuits and more t.v. interviews!

Well, Savannah and I got our new swimsuits for the season yesterday.  We just love them.  We try to dress in ways that would glorify God...and this does not stop with our swimwear.  We have found this awesome site:  
This is our third year to buy from this site.  Her suits are wonderful!
We had more t.v. interviews this morning with our local news station.  The t.v. station also shadowed Savannah at school and filmed her doing cartwheels!  She could not do cartwheels just over three months ago (caused too much pain).  So, praise God... the medicine is helping!  The first class of gymnastics is today.  I will let you know how it goes!

Monday, April 9, 2012

Let's Try Gymnatsics!

This is a big week!  Savannah starts gymnastics class this Friday!  It is a one day a week class, for one hour, for four weeks.  It is a start.  You know, it may not be a huge commitment, but it is a commitment.  Sometimes, you have to take small steps, and that is okay.
Savannah continues to improve.  Some days are better than others.  This morning, her back was killing her, so she took an extra long hot shower before school.  Today, Savannah told me she had an idea of why she kicked so much when I was pregnant with her.  She said it was probably because her legs were stiff from being in such a tight position!  This is coming fro a girl who is in the process of taking S.A.T. tests at school.  I knew the testing would be a challenge for Savannah.  However, I was wrong at why.  I thought it would hurt her hand to fill in all the answer circles.  While it is hard on her hand, it is sitting still for so long that hurts her most.  Her whole body becomes stiff, but the children are not suppose to move after testing is completed (so as to not to disturb others).  If someone with arthritis sits still too long, they stiffen up.  If they do too much (like coloring in lots of little circles on S.A.T. test answer sheets), they hurt.  It is a double edged sword.
However, Savannah continues to rise to the occasion!
I dedicate this entry to Savannah’s long time friend, Mary Clara, who has agreed to take gymnastics with Savannah.  Savannah will push through much more if she has a friend encouraging her!  Isn’t that true of all of us?! Thank God for friends.