Thursday, August 8, 2013

Summer Ends - Pain Begins - Please, Pray for Savannah

Summer is drawing to an end.  This is my first post in a long while that is devoted to Savannah and her progress.  She has had a great summer...She was off all medicines and had manageable pain.  She went to Disney World, swam, had picnics, visited her grandparents and cousins, and just had fun!  Then one day (about ten days ago), the arthritis decided to consume Savannah's body again.  I knew the day would come, but one is never fully prepared for it.  Savannah has spent the last two days having to use a wheelchair on our errands.  It's okay, we still have fun, and we just take each day as it comes.

What caused the flare in her body???  Was it being off her medicines for 90 days?  Was it the airline ride to her grandparents?  Is it being brought on by the stress of starting school on Monday?  Nobody really knows. It could be all of these answers, it could be none of them.
At Savannah's request and her doctor's suggestion, we have started back the sulfasazaline drug. Another Biologic may soon follow, but we will cross that bridge if necessary.  More MRI's are probably coming to see the extent of the arthritis.

 Savannah's jaw is hurting badly, too.  She has already had two steroid injections to both sides of her jaw (the maximum allowed).  I am not sure what is next, here, either.

So, I am asking for prayer....Prayer that Savannah's pain becomes more manageable for the start of school and for everyday life.  Remember, Savannah has to use the arthritic hands to write...and write a lot.  We are thankful for her teachers who will do their best to aid her so she can try to keep the pace.

I (mom) am scared, but I try not to show it.  I will encourage Savannah to keep pressing forward.  We will dance in the rain when needed.

Along the way on such a journey, you meet some special people.  There is a lady named Jessica of Gracie's Gowns.  She has made a hospital gown for Savannah to wear when she gets future medical tests and treatments.  The fabric is of famous artwork (Savannah loves art!) and the gown has Savannah's name embroidered in the bottom right corner.  Savannah's face lit up when she received the gown! It is acts like this that make our journey a little easier.  Thank you, Jessica!
Facebook: Gracie's Gowns


  1. Jenny, I love y'all and am praying hard for you as a mama in this situation and for Savannah, who just wants a normal life. You are both so faithful, strong and brave. I am praising God for a wonderful summer and pleading with Him to relieve her pain for the school year. Please share with me anything else we can do for you or for her.

    1. Eden

      I love you and your boys. It is because of prayer Savannah has done as well as she has done. We are thankful for a great summer with manageable pain. God has got his girl and will help her manage...He will carry her if He needs, too. For now, we just take one day at a time. Thank you for your loving words and friendship. -Jenny

  2. Jenny,
    Thank you for this blog. I am only just now stumbling across it. My daughter, Hannah is also starting 5th grade this year and was diagnosed with JRA at the age of 3. A combination of MTX and Enbrel allowed her to sneak into remission by the age of 7. We went for a routine check in with her rheumatologist two weeks ago and to our surprise, her arthritis is back. It is always a surprise to see how the pain just creeps back without anyone really noticing. We are back on MTX and just yesterday went to Childrens Hospital Boston to see a jaw specialist since there is suspicion of arthritis in her jaw. They ordered an MRI. I know nothing about the process of an MRI and when I googled JRA, Jaw, MRI, your blog popped up. I wonder did you do a blog entry on the MRI process/Jaw injections? Cyber support can be a great thing and I"m grateful to have stumbled across your blog. We are thinking of your sweet girl as she settles into a new school year and hope her symptoms calm down.

    1. Hi, Nikki! Thank you fro your comment. Yes, there are a few entries concerning jaw injections on this blog...see 2012 August and September posts in "Blog Archive" on right side of blog. Also, under "Popular Posts" (also located to the right side of blog page), there is a jaw injection entry. Savannah has had a lot of trouble with her jaw over the past couple of years as a result of her Juvenile Arthritis. There are options, though...see the posts I mentioned.

      I am sorry to hear your daughter's pain is back. JA is a roller coaster ride full of ups and downs. Enjoy the good days, and look for the beautiful scenery when you hit a rocky stretch in the road. I know, some days it is hard to do this. I am glad you found this blog. You are not alone on this journey. -Jenny