Smiles, Joy, Hope . . . . . and shifting focus for now.

After nearly two years of uveitis, macular edema, and jaw reconstruction surgery overwhelming our thoughts and our lives, we are finally on a even keel and peaceful section of this JA journey. Since I last posted, Anna has had a Remicade appointment, a visit to the Lancaster Cleft Palate Clinic to adjust some brackets and wires, and a visit to her ophthalmologist.  That was a great visit!  Both eyes were still clear, so we took a step by eliminating the Pred Forte drops.  First time to be totally off Pred Forte drops since January 2014.  Now that is worth celebrating!!! (After almost a year of seeing the ophthalmologist and his office staff every 2-6 weeks, we now don't have to go back for awhile---I cheerfully told them, "Happy Thanksgiving, Merry Christmas, and Happy New Year!  We'll see you later!")

So how does Anna keep busy when she doesn't have many medical appointments to fill her time? Besides her high school classes, attending football and now basketball games to participate in the student cheering section, she has been working diligently at a particular piece of music for District Band auditions last Saturday.  Some of you know that this was actually a concern for me.  Anna had a 2-month hiatus from playing her instrument in August and September--and into October. When she picked up the bassoon again after her jaw reconstruction, she had to get used to her teeth feeling different.  They were now in a different position, so she had to find a new and comfortable position for them as she plays her bassoon.  When she would practice long and diligently, she could feel her jaw swelling.  One evening, after playing for well over an hour, she said she could feel a lot of pressure in her jaw.  (Another night, she began putting her instrument away after ten minutes of playing, because her jaw was already beginning to swell.)  I was continually recommending ibuprofen.  But the great news is that she successfully made it through auditions!  She will have about six weeks in January and February that will be intensive in learning music and playing her bassoon for District Orchestra, District Band, and for County Band.  I know some of you pray for Anna a lot (Thank you!).  If you think of her after the new year, you can pray for her about these musical festivals and the well being of her jaws and her stamina.  Just one full day of auditions wiped her out physically.  As I look at the schedules for these festivals she will be participating in, I can see that she will be very busy, and I know already that she will be exhausted once these two-day events are over.  But we know that God promises to go before her, and He will give her strength as she needs it.  (Since beginning Remicade, there are times when she will go to bed early and sleep for 12 hours straight if she doesn't have to get up for anything like school or church.)  She will just need a day or two of sleep once she returns home.

Despite these little concerns I have about the music festivals, I am SO very glad that she once again has these opportunities--especially during her senior year of high school.  And two of the three festivals will be over before her college class begins, so that will greatly help.

For now, we are focusing on preparing our hearts and our home for the Christmas season. We love this time of celebrating the birth of Jesus with family and friends---knowing that because of Him, we can truly have hope and joy along this journey of life---through the good times and in the tough times, as well.  We have experienced His love and His peace (more each year, as He shows us His mercy and grace continually), and as I say in this year's Christmas card, it is our joy to worship and celebrate Him daily, but even more so during this season.

The Fireflies Went Away, but then came back (just a few of them . . . )

(In the picture above, Anna is playing a "Toss the Christmas Card" game at a recent Christmas party, while her brother, Joel looks on)

It's been a long time since I updated! And well, you know, sometimes I'm never sure how many people read my blogs anyway, but it was so nice of Jacob's mom to ask how things are going. And since she asked . . . . sometime near Anna's birthday (in late September), we suspected that Anna might have pink eye (conjunctivitis). Believe it or not, this was my first experience as a mom with this condition---none of my kids had ever had it before. So I searched on the Internet to find symptoms, and I immediately found out that sometimes uveitis can be misdiagnosed as conjunctivitis. So I called Anna's pediatric ophthalmologist, and he was able to squeeze her into his schedule that morning. Even though I wasn't thrilled about conjunctivitis, I was actually very relieved that it wasn't a flare of the uveitis! (Her eyes were very, very pink, and I figured if it was uveitis, then it was a very big flare . . . because she had never had uveitis symptoms like this!).

So the doctor sent us home with sample drops (they were sufficient to combat the infection---we didn't even need to get the prescription filled).

The good news at that appointment was that Anna's eyes were totally clear of the inflammation. Her regular uveitis check was scheduled for about 10 days after this "Pink Eye Appointment." So we returned to the pediatric ophthalmologist for that appointment, only to find that a trace of white cells had returned to the left eye. Barely a trace, but a trace nonetheless. So we are keeping the same regimen of medication (the Cyclosporine, Methotrexate, Leucavorin, Pepcid Complete) for now. We go back in early January, and we'll see where we are at that point.

Her joints are fine. There was minimal concern about a part of her foot, but the pain she described was descriptive of a tendon issue rather than a joint issue. Anna had an appointment with the family doctor for a checkup last week, and the pain was no longer an issue for her, so it must have just been something minor that healed quickly. Anna continues to grow taller . . . she only needs to grow about an inch and a half to catch up to me! (But that's not saying much, since I'm pretty short!)

We continue to keep busy! Anna is greatly improving on the playing of her bassoon. She has a holiday concert tomorrow night at the elementary school. She sang with her dad at church yesterday (for the offertory) and received a great many compliments. :o)

Since I know some people are reading this blog, I'll do my best to keep it updated more frequently. I'm so glad that other Juvenile Arthritis parents find it helpful.