Friday, January 08, 2016

Quietly Confident . . . . . beginning a year of transition in Anna's JA Journey

The beginning of this new year of 2016 has already brought reflection as well as looking to the future.  We've been on this journey a LONG time (diagnosed in 1999 when Anna was not quite two years old)!  The uveitis has been the most stubborn; the joints have usually responded well to steroid injections.  The TMJ involvement (discovered several years ago) was an unwelcome surprise, and the recent jaw reconstruction surgery was a major event for Anna and our family.  After a few weeks of treatment for the recent flare of uveitis, her left eye is once again clear, and although Anna was concerned that some small changes in her vision signaled a recurrence of macular edema, an OCT (Optical Coherence Tomography, or imaging of the retina) showed that the back portion of her eye looks normal.  (Praise the Lord!) Overall, Anna is doing well.  (I hope that is good and hopeful news to JA parents who are trying to get a glimpse of what the future may hold for your children---I know that some children with Juvenile Arthritis have more pain and problems than Anna does, and others have had less issues.)

We have an end in sight for the braces---Anna is scheduled to get them off the first week of May.  Now that's exciting!  Just before prom and graduation!

Anna is a senior in high school, already taking college courses through the dual-enrollment program, and she is eager to enroll at Messiah College as a freshman this fall. Her current plan is to study Human Development and Family Studies, with a goal of becoming a Child Life Specialist at a Children's Hospital.  (This JA Journey has been significant in Anna's developing interest and passion for this field of study.)

Graduating from high school and moving into "adulthood" does not mean that Anna gets to "graduate" from Juvenile Arthritis and uveitis.  It does mean, however, that sometime in the summer, she will "graduate" from the pediatric rheumatology department where she has been seen (by the same doctor) since she was a toddler.  There is definitely sadness with this transition, but the positive side of this is that because her rheumatologist knows Anna so well, he has a good idea of the right fit for an adult rheumatologist.  He has a particular adult rheumatologist in mind for Anna.  We've learned to trust his judgment about so much--we're going to trust him with this, as well.

A friend of mine was telling me about a video she recently saw.  I watched it this evening, and thought that this is GOOD---going from fear to quiet confidence.  This video was talking about a job situation, but I also think it can be a description for all aspects of life. When we first started on this JA journey, there was so much uncertainly and fear.  (Sometimes, unexpected flares can be rather frightening, as well as changing medications, and new biologics, etc.) But watch this video (only 6 minutes!)---what if we aren't afraid?  What if this journey has been designed specifically for us by God?  He has walked beside us all along. He continues to walk with us.  We can approach the future (with the changes that are coming) with confidence.







1 comment:

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