Monday, December 14, 2015

The Unexpected Road . . . . .

We are on the rollercoaster again with this JA Journey.  We were so happy to take the Pred Forte eye drops "off the table" for Anna before Thanksgiving--about 3-4 weeks ago.  Anna has had clear eyes for several months now, and we were so hopeful that this good news would last for a long time.  I do remember that she had clear eyes without drops for almost two years before Humira stopped working for her (in early 2014), and I was hoping that we could get to that point again.

Even though Anna's uveitis is usually asymptomatic, over the weekend, I noticed that Anna's left eye was really bloodshot.  When I asked her about it (and started to think of everything that could cause this problem), Anna was telling me that her vision in that eye was different.  We contacted the ophthalmologist early Monday morning and were thankful that they had some cancellations in their schedule and could squeeze in an appointment for Anna.  The verdict:  2+ inflammation---in just 3-4 weeks without the Pred Forte eye drops (and no missed doses of Methotrexate or Remicade).  Anna is back on the steroid eye drops, 4x daily for at least the next week, and he will see us again on Tuesday.

I feel like Sunday was the worst day---knowing something wasn't quite right, but needing to wait another day to call the doctor.  Now we know the problem, and we have a plan.  That's a positive.

We still have so much to be thankful for.  A bloodshot eye that made me ask Anna some questions.  Cancellations at the doctor's office that made some space for Anna to be seen early this morning, so we didn't have to spend more hours wondering and worrying.  I once heard someone challenge us to ask God to reveal Himself to us, because that's what He's all about---He really wants us to know Him---how much He loves and cares about us.  In the middle of unexpected difficulties, we can still find some positives--we see evidence of Him working.  He helps us work through the worry to come to a point of peace and calm.

We always appreciate your prayers for Anna!

Tuesday, December 08, 2015

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.