As of today, we have a plan. And we have a little breathing room. At Anna's appointment with the ophthalmologist this past Thursday, the inflammation was better. A 2+ instead of the 4+ inflammation a week prior. (ANY inflammation is not good, but a 2+ actually sounds good after a 4+!) Anna's pediatric rheumatologist has researched the latest information available to decide between Remicade and Orencia. The plan is to start Anna on Remicade. Then, once her eyes are quiet, he will switch her to Orencia. This will happen soon, but we still have some things to do, like wait for the insurance company to approve the Remicade, get a TB test for Anna (that will happen this week), and settle on a time frame for the infusion. Anna didn't realize until tonight that this means she will no longer be taking Humira. She seemed pleased with that. She's glad that she can give herself injections, but it's not her favorite thing to do.
I choose to share Anna's story here, because for so many years, I have wanted other parents to know that Juvenile Arthritis does not HAVE to overtake your life. (Things I wanted to read when Anna was first diagnosed and I wanted to have a glimpse of what life might be like in the future.) I do have to concede that for the past few months, this disease (more the uveitis than the arthritis in the joints) has interfered with our lives a little more than we would like, although not nearly as much as some families experience. I do believe, though, that this is just a season of life. Although we cannot choose our circumstances, we can choose our response. So we continue to choose to pray for those who make decisions for Anna's care, for wisdom and clear direction. We choose to find all the things we can be thankful for, and we've seen and felt so many answers to little and big prayers. We choose to laugh and set goals for the future. This may be a sizeable bump in the journey, but the journey is not done yet! Stay tuned . . . .
1 comment:
Treatment of the inconveniences of uveitis, particularly cystoid macular edema, is troublesome. Octreotide might be an alternative. There herbs or Uveitis Natural Treatment for fight the symptoms.
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