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.  

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.

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.

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.

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.

Savannah is our hero!

Savannah just finished a four week session of gymnastics at our YMCA...one 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.

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): http://www.waka.com/home/top-stories/Arthritis-Unacceptable-Pain---Savannahs-Story-149744425.html