I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis. Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."
Tuesday, January 27, 2015
Unexpected GREAT News!
Well, many of you know that we experienced several weeks of thinking about worsening macular edema, possible solutions with definite risks, and wondering how we were going to juggle an increase in appointments in Hershey (that comes with the territory whenever the eyes have issues). And then, as my last post discussed, the threat of a snow storm on the morning of Anna's appointment which had already been rescheduled twice. I've been having constant conversations with God, asking for wisdom, and as the first chapter of James tells us, thanking Him, knowing that He will give wisdom abundantly when we ask!
We ended up with a family adventure---drove to Hershey (in light rain) and camped out at a hotel overnight (I never knew that this hotel offered a flat rate discount for patients of Hershey Medical Center! That was so nice---it pays to be a little chatty when you make inquiring phone calls) Even though the storm was not as severe as predicted, it was nice to have a complimentary hot breakfast at the hotel (slow, quiet night and morning at the hotel---there was only one other couple in the large dining area), and to only travel about three minutes over to the campus of HMC.
We explained the recent history to this retina specialist (only the second time we've seen her), including the major concern three weeks ago, when Anna's visual acuity was tested (and found to be problematic) at the ophthalmologist. We had an OCT done, and it's amazing!!! That OCT (an ocular CT scan---it takes photos of the back of the eyeball) is the most normal OCT I've ever seen of Anna's eyes. Whatever problem there was three weeks ago (and there was, indeed, a problem, and Anna said then that she had noticed a change since Christmas) is gone. Wow! Awesome! so instead of talking about the not-so-great options for treating macular edema, we can cancel next week's appointment with the ophthalmologist (and reschedule for six weeks from now), schedule the next appointment with the retina specialist for late April, and talk about the short-term goal of getting Anna totally off the Pred Forte drops, using Methotrexate and Remicade to keep things under control. (Of course, we can call and get in to see either doctor if Anna notices any adverse changes.)
I have a tendency to over-think anything and everything in life. And it's easy to do so now. Is this a miracle? I have no idea. The doctor said that macular edema can come and go (I had no idea that it could go away THIS quickly!). Why has God allowed this to go away now and not anytime last year? I have no idea! I'm all for accepting that God allows things in our lives to refine us and to help us grow and mature. I have worked to accept that. For whatever reason that we have this wonderful turn of events, I am so grateful and inwardly dancing with joy and thanking God over and over that our lives are not going to become even more complicated in the next few weeks with added appointments and treatment options. If I use the analogy of trying to keep a row of spinning plates balanced and spinning, I can say that I feel like someone has removed one plate---one less plate to spin, and that is a HUGE relief.
We are so grateful for the prayers and support and encouragement we receive from so many friends and family. We're thankful for you, and so glad that we can share great news that we are on a easy road at least for now (jaw reconstruction surgery is still on the horizon for early summer).
For today, we are joyful. We are smiling. We are laughing. And we're laying down some of our concerns. It's been a good week so far!
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