Wet Hair and Rolling Chair!

Savannah's journey with Juvenile Arthritis

It has been a week of ups and downs, hills and valleys, frowns and yes...smiles. The week (Monday) started with a visit to Children’s Hospital where Savannah received her first Orencia infusion followed by four spine x-rays.  Both went well.  Thank goodness, nothing of significance showed up on the spine x-ray.  Tuesday morning...oh, the pain!  Savannah could not walk that morning because her feet and ankles hurt horrible.  I had to carry Savannah to the bathroom, then to the couch, then to the shower (where she stayed for a long time trying to loosen up her joints and tendons).  She stayed in the shower so long, we had to go to school with wet hair.  Savannah’s feet were still not better after the long shower (which is not the norm).  I had to dress her, carry her to the car, and then she walked super slowly into school...wet hair and all!  Each day since Tuesday has gotten a little better.  However, my back has been hurting (from carrying Savannah) for days.  Hence, I bought a rolling desk chair at the suggestion of a wise person...my mom!  I pushed Savannah from the bed to the bathroom, with the rolling desk chair,  for the first time this morning.  It worked great!  After about 30 minutes of being awake, Savannah was able to walk on her own.  YEA!!!

Savannah starts physical therapy on Monday.  She will do this twice a week for the next couple of months.  Who knows if it will help, but we can pray!  Savannah’s next Orencia infusion is a week from this Monday.  So, back to Birmingham we will go!  All in all, life is good.  Savannah could walk after 30 minutes this morning!  She gave herself her Methotrexate shot without much complaining!  She had a smile on her face when she walked into her classroom at school!  I am grateful for these things and more.

A new blog to help spread awareness!

Savannah's journey with Juvenile Arthritis

This is day one of a new blog so that Savannah's story can be shared with a wider audience.

Savannah is doing pretty good.  She still fights joint pain in her fingers, wrists, neck, back, knees, achilles tendons, and feet.  Her worst pain is in her fingers and feet.  She has a hard time writing in school each day and cannot run for a long period of time without pain.    She started Methotrexate injections in September of 2011 (at age 8 years old).  She give herself a shot every Friday.  She also started Remicade infusions, every 4 weeks, at the same time.  Not much result has been seen with the Remicade.  Savannah starts Orencia infusions on Monday at Children's Hospital. The above picture is of Savannah as she awaits to get steroid injections into both sides of her jaw. Many people do not know that many children with juvenile arthritis also get arthritis in their jaw, which causes pain when eating...or just about any time. Juvenile arthritis is just plain unacceptable! However, when life gives you lemons, we must make lemonade! That is what this site is all about.

Here are some of my first few journal entries at the beginning of this journey:

Friday, August 12, 2011

"I'm afraid ..What is this pain???"

I need prayers.  This evening before bed, Savannah shared with me about her day (2nd day of third grade).  She said they made a neat snack (which I got to eat...yum!).  She talked happily about her nice teacher.  Then, tears welled up in her eyes.  She told me about Rocket Math and how you were suppose to write as many numbers as you could in one minute.  Savannah said, "Mom, I made it to 14 before my hand hurt so bad I had to drop my pencil.  I had to keep going.  I wrote to 17, it hurt, but I made it to 19.  My hand hurt so bad after that.  Mom, how am I going to keep doing Rocket Math?"  I asked her if she did her best.  Savannah answered "yes."

Savannah then went on to tell me about writing in her journal and other things.  She went on to say she was afraid she would not be able to finish all of her work in time and that she would have to stay in from P.E.  Savannah struggled with this some last year.  However, with time, Savannah has become worse instead of better.  The start of this year (3rd grade) is worse than the start of last year with the pain.  I thought two years of Private Occupational therapy might do the trick...it was just a small band-aid.  I thought the special insoles in her shoes from the Orthopedic Surgeon would solve her feet pain...another small band-aid.  I thought "growing pains"...she will outgrow this! It hasn't happened.  It is so hard to see your child in pain from coloring a 4"x4" area with a crayon..."Mama, can you finish coloring the sky...I can't, it hurts."  She said she is worried about running around the field in P.E., and getting her completion ribbon.  P.E....who has a hard time in P.E.?  Please pray hard the doctors will find answers and solutions soon.  She has had small signs starting around age 4 or 5, but the last 6 months have been the worse.

Tuesday, August 30, 2011

"And the Treatments Begin"

Savannah's Rheumatologist did not like that there was a "cell" in her eye.  That means the very beginnings of Uveitis...a dreadful thing that is one of the leading causes of childhood blindness.  However, they have caught it very early.  Praise God!!!

As a result of Savannah's JIA (arthritis) and the beginnings of uveitis (which is found 10-20% of the time in children with Savannah's type of JIA), Savannah will start three medicines over the next several days.

• Thursday at dinner (unless CVS gets this prescription in sooner) - Savannah starts Diclofenac - 3 x per day with food.  This is a heavy duty anti-imflamatory.  Starting Friday, Savannah will have to go to the school nurse after lunch each day to take this pill. ( I will get it to the nurse).  

• Friday - Savannah will be given an injection of Methotrexate (by me).  This will be given once a week, every Friday.  This is another potent drug for arthritis (chemo drug in lesser amount).  She will remain on this drug for probably the rest of her life.

• Sometime next week, when Children's in Birmingham gets all the paperwork set up and done, Savannah will travel to Children's Hospital in Birmingham to get an infusion of Remicade.  This will be done twice in September, and then once a month there after.  This infusion will last about three hours each time.  This treatment will also aid in Savannah's arthritis, but is mainly being used to treat the Uveitis.  The infusions will have to be given monthly for several years...Uveitis is mean.

Friday, November 18, 2011

"I Hate this Disease"

My mama taught me as a child to not “hate” anything (accept for the devil).  So, I try not to use the word “hate” ... but, I HATE THIS DISEASE!

Friday is shot day.  Savannah did not want to take her shot of methotrexate today.  She ran from me a little while.  She said she was “tired of needles.”  Here is Savannah and my conversation this morning:

Savannah: “Mom, I am tired of needles.  I don’t want any more shots.”

Mom:  “You have to take your shot. You have no choice.”

Savannah: “What if I quit taking the shots.  What will happen then?”

Mom: “Your arthritis will continue to get worse.  It could eventually force you not to be able to write or even walk. You have to take this shot the rest of your life.  It is your new normal.”

Savannah: “I don’t like arthritis.”

This should be no person’s “normal”.  It should especially not be a child’s “normal”.  I cried on the way home from school today.  My daughter’s childhood is being stripped away...to be replaced by stiffness, pain, struggling to keep the pace with her every day school work, doctors visits, infusions, feet hurting at night after running in recess.  The cold weather is affecting her, too.  I want to give her my hands and feet.

However, we all have something that hinders us.  I do hate this disease, but God is still good.  We will not give up!  Please, keep praying...and thank you for listening and sharing in this journey.

Savannah and two of her classmates at their lemonade stand.
"Help Fight Juvenile Arthritis"
Over $100 made with that lemonade stand, and all of it went to the Arthritis Foundation.