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."
Thursday, January 29, 2009
Just a little update . . . .
We've lowered the Cyclosporine dose to 75 mg., but won't know what effect (if any) that will have with Anna's eyes. We have appointments with both specialists in March (different days/weeks). In the meantime, we've been living life and having fun, although everyone in the family has had some sort of virus (each a different type) in the early part of January. Anna's virus affected her stomach (heard later on the local news that people were flocking to the ER with Anna's symptoms, although we didn't . . . just rode them out---she had rather severe stomach cramps---among other things---with her virus). Anyway, the only reason I mention that is because we let her skip the Cyclosporine and even a weekly dose of Methotrexate. I really need to write that down, because the ophthalmologist likes to know every detail (when?, why?, how much?, how long?) if we skipped a dose or two. In the past, a skipped dose or two (while recovering from a virus) has not had any affect. We'll pray it doesn't this time, as well.
Monday, January 05, 2009
Good News for a New Year!
Anna had another appointment with the pediatric ophthalmologist today. After using the slit lamp machine to carefully look into the depths of Anna's eyes, the doctor said, "Happy New Year! She looks GREAT!" They are both totally clear of inflammation! At first, the doctor was planning to maintain Anna's current level of medications (and have us return in ten weeks), but I asked him how long her eyes would need to look "great" before we could begin lowering some medications. The pediatric rheumatologist (at our visit with him in December) was hoping to start a very careful decrease if Anna's eyes were continuing to look good. The ophthalmologist had a letter from the rheumatologist to that effect (it was, in fact, at the top of Anna's file). So the ophthalmologist agreed that we could try lowering the cyclosporine to 75 miligrams daily (down from 100 mg.). Anna was in back of the ophthalmologist (sitting in the exam chair) grinning broadly at this decision and giving a silent "YES!" There have been times in the past where I have worried over decreases in medication, but I'm not thinking about what might go wrong at this point (a few years ago, a decrease in Methotrexate caused significant flares in the eyes and a slight flare in her joints). I'm just really happy for right now. :o)
As Anna was sitting in that exam chair today, I was thinking how grown up she's been looking lately. Hardly a little girl any more, but a young lady. Time just doesn't stop.
In other news, our freezer died. I think it's been on a slow road to death for awhile (it's been "kind of" working but not working/freezing well. Scott knew for sure that there was a major problem when he went to get ice cream out of the freezer last night, and it was more like a very thick milkshake.
I whispered a little prayer this morning, "Lord, please order my day." And boy! Did my day keep me busy and moving! (I told Anna later that when I whisper a prayer like that, then I figure that any interruptions or surprises during the day are just the way things are meant to be and happen, so I don't get bent out of shape about them.) After tackling a mountain of work (I had been on vacation since December 24th), I arrived home with about 20 minutes to spare before Anna arrived home from school and we headed to Hershey for her appointment. Then when we arrived home again, Abby and Joel informed me that Scott had called them to give them instructions about getting the ice cream out of that freezer (we ate some and gave some away to neighbors), and to let me know that we should probably go shopping for a freezer tonight.
So everyone grabbed something to eat for supper (besides the soft ice cream---mostly omelets and/or scrambled eggs), then I took Anna to youth group and the neighbor kids to our church's Bible School program while Scott and Abby and Joel unloaded all of the food in the freezer into boxes. The boxes of food went to the church, which had an empty freezer which we were told we could use. In my little amount of time at home before playing "taxi," I searched for freezers online at Home Depot, Lowes, and Sears---found what we wanted (the only chest freezer with an energy star rating), and called Lowes to find out why the website said that none of the stores in a 20-mile radius had that model available. Bottom line . . . we printed out the model and price from the website---they had almost the same freezer in the store, and he gave it to us for the on-line price ($30 cheaper than the store model). They had some in the warehouse, and it fit just perfectly in the van. So now we have a new freezer, and we arrived home just in time for me to hop in the car and pick up the neighbor kids and Anna. Now I'm ready to sit and chill a bit. I'm so glad tomorrow's my day off!
(The picture above is from Thanksgiving . . . Joel was trying to get a great picture of the capitol building in Harrisburg from Riverfront Park.) :o)
Supporting the Arthritis Foundation -- The Jingle Bell Run
Back in December, Anna's dad (my husband, Scott) and her brother Joel participated in the annual Jingle Bell Run in Harrisburg, which supports the Arthritis Foundation. This was Scott's first 5K running event! We were so proud of him! Joel has been participating in this event for quite a few years---back when the crowd of runners wasn't really a crowd, and he could easily figure out if he would place in the finish for his age group. We're very glad for the Arthritis Foundation that this event in our area continues to grow. This year, they raised over $27,000 for that run. Our busy schedules (three kids and many responsibilities keep us hopping) have caused us to prioritize many of our activities, and for the Arthritis Foundation, this is the one event we've focused on lately.
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