We've had a few appointments since I last posted, so I have a few updates to share. We are very pleased and thankful that the appointment with the ophthalmologist showed that the inflammation in Anna's left eye is down to a "trace," and her pressures were acceptable, so she is down to one drop of Pred Forte in the left eye daily. Not crazy about little bumps in the road, but so thankful that maybe this is just a blip and will soon be a memory.
Anna's elbow is still a bit of a bother in the mornings, but we've had discussions (between Anna and myself) about it. Dr. G. (the pediatric rheumatologist) had suggested that she could take ibuprofen up to three times a day to help with that, but she doesn't want to do that at this point. I told her that she needs to talk to Dr. G. about the pros and cons of just living with the pain vs. taking the ibuprofen. (Or he may even adjust her other medications.) If this continues, I know it will be a topic of discussion at the next appointment in February. (In less than two years, she will be considered an adult by the medical community, so she is taking responsibility for listening carefully at doctor's appointments and being part of the decisions, and being responsible for her medications---she's always been intrigued by the body and medical stuff, so it doesn't take great effort for her.)
I've included Anna's panoramic x-ray from the Lancaster Cleft Palate Clinic. You can see the vast difference in the left vs. right TMJs, and this is why reconstructive surgery is necessary for Anna. So we are "on the road" for this new journey---which will take about two years. One year for the orthodontic preparations, and then surgery after that, and then some post-op orthodontics and follow-up. So many feelings and emotions---a little bit of trepidation in stepping out to have major surgery done, knowing that it will bring temporary pain and weeks of healing, the little bit of excited anticipation at taking steps to fix something which is damaged. But I have to tell you that the overwhelming feeling I have is PEACE in this decision. And this is huge, because as I constantly pray for wisdom (knowing that God promises to give wisdom in abundance when we ask, as found in the first chapter of the book of James) and direction on this JRA journey, I do my best to listen to God, who hardly ever speaks audibly to me! But He has so many other ways which I've learned to recognize. And so with this group of doctors at the Lancaster Cleft Palate Clinic, and the answers to my prayers about the cost of the orthodontics (I was gathering information and gearing up to "present my case" to the insurance companies, only to be told that Anna's supplemental insurance through the state will cover all of her orthodontic care for this surgery---what a huge blessing and answer from the Lord!), we have experienced so many "green lights" as we've taken steps to see whether and when we should take steps in this direction. And that peace that I spoke of earlier has been so very present every time we think about this and pray about this and make the trip to Lancaster. Looks like we'll be doing that a little more often in 2014.
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."
No comments:
Post a Comment