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.

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.

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 kid...to 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 hurting...like 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!

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.

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...

New school year...same pain...new 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 characters...now, 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!

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.