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."
Anna reads a book while waiting for the retina specialist
We had an appointment with the retina specialist today. She monitors the macular edema, which hasn't been a problem for months (thank the Lord!). Anna had seen the ophthalmologist almost three weeks ago, and he saw only "trace cells" in the left eye. Today, I think (and the retina specialist believes) that Anna's weeks off Methotrexate and a prolonged span between Remicade infusions (because of the upcoming and then postponed surgery) has caught up with the eyes. There is a "dusting" of white cells around the cornea. (She let me look at them through the lens she uses with medical students and residents---that experience was simultaneously interesting and dismaying---because of what I was seeing.) The answer is not simple, because of the postponed surgery, scheduled for August 10th. Anna started back on Methotrexate last week, but will have to take a break from it again closer to the surgery date. We will schedule Remicade for sometime in mid-July and then again about two weeks following Anna's surgery. Anna is to increase the frequency of both the Prolensa and the Pred Forte eye drops for now.
I've heard many wise mentors ask people, "So what has God been saying to you lately?" And because I've heard that question asked throughout the years, I've worked to listen carefully to what God is saying to me (just in case someone asks!---and besides, I want to know!!!). I had a lot of time to listen this morning, because at the crowded Eye Center at Hershey Medical Center, there is a lot of waiting time. (We arrived at 8:30 a.m. and left at noon---sometimes I've thought they should provide treadmills for patients and parents, so that we're not constantly sitting or making people nervous by walking around in small spaces!) A few things came to mind today. I recently heard or read that if we truly knew God and who He is, we would never need to fear anything at all. I was thinking about this before the eye exam, and that was a good thought to be meditating on. And the song in my head this morning (all morning---before and after) was Colton Dixon's song "Through All of It." I'll post a video below. And on the way home, on the radio, a song reminded me that "God is in control." He truly is our anchor---our steady rock, when the road gets a little bumpy.
I know so many people are praying for Anna and for us. Thank you!
Family, friends, and many people we don't really know all that well have been praying for Anna and for us, especially this past week. People we do know and see have been asking how she is doing, and I'm happy to say MUCH BETTER! As Anna's ear and sinus infections have been improving, the jaw stiffness and pain which was so concerning has gone away. So now we're not certain whether the stiffness and pain was a bout of active arthritis, or a result of her infections causing pressure against her jaw, or what. Did it go away because the infection is receding? Or because of the power of prayer? Or both? Maybe both. For whatever reasons, we are so thankful for your prayers for us. We can feel the peace and calmness in the midst of a total change of our schedules---peace replacing the worries. We've been able to find the good parts of rescheduled surgery, like Anna being able to take her finals on schedule (I really was worried about her taking them later but with the fog of anethesia, as I've experience after past surgical procedures.) Only one more to go as of tonight! And then her summer vacation begins! She will be able to help at the high school graduation next week, as well! She has a lot of friends who will be graduating in the class ahead of her, and she is glad to help and be a part of their special evening.
We have a tentative August date for surgery, but no confirmation yet.
Thank you again for your prayers.
The video below is so fitting for us. I love how God provides songs that are so appropriate and timely for us as we travel this journey of life. Our help HAS come from Him. He HAS pulled us through (and will again when we need it). He is our rest and our refuge, and we know that He has carried us on His shoulders.
Lyrics:
Shoulders
By For King & Country
When confusion's my companion And despair holds me for ransom I will feel no fear I know that You are near
When I'm caught deep in the valley With chaos for my company I'll find my comfort here Cause I know that You are near
My help comes from You You're right here, pulling me through You carry my weakness, my sickness, my brokenness all on Your shoulders Your shoulders My help comes from You You are my rest, my rescue I don't have to see to believe that You're lifting me up on Your shoulders Your shoulders
You mend what once was shattered And You turn my tears to laughter Your forgiveness is my fortress Oh Your mercy is relentless
My help comes from You You're right here, pulling me through You carry my weakness, my sickness, my brokenness all on Your shoulders Your shoulders My help comes from You You are my rest, my rescue I don't have to see to believe that You're lifting me up on Your shoulders Your shoulders
My help is from You Don't have to see it to believe it My help is from you Don't have to see it, cause I know, cause I know it's true
My help comes from You You're right here, pulling me through You carry my weakness, my sickness, my brokenness all on Your shoulders Your shoulders My help comes from You You are my rest, my rescue I don't have to see to believe that You're lifting me up on Your shoulders Your shoulders
My help is from You Don't have to see it to believe it My help is from you Don't have to see it, cause I know, cause I know it's true
Songwriters: Ben Glover, Joel Smallbone, Luke Smallbone, Tedd Tjornhom
