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.