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.