Sunday, April 27, 2014

"In the Arms of God, Who Won't Let Go"

God continues to speak to me through so many various songs lately as we travel this journey.  On Easter Sunday morning, we were singing a song I've sung countless times in my lifetime.  I had even prepared the PowerPoint slides for Sunday's worship service, but the relevance of the words didn't truly sink in until I was staring at the words on the wall as we sang, "How sweet to hold a newborn baby . . . but greater still the calm assurance, this child can face uncertain days because He [God] lives."  ("He Lives," Gloria Gaither | William J. Gaither; © 1971 William J. Gaither, Inc.)  Such a perfect reminder for me, especially when my heart's desire is to live what I truly believe.  Since I believe that I serve a living, loving God whom I can trust with all of my heart, then I can trust my children's "uncertain days" to Him.

And then there's a Casting Crowns song I first heard at a concert I recently attended.  Just purchased the album two weeks ago and had a chance to really listen to it yesterday as I was cleaning my kitchen.  "Just Be Held" has such beautiful words and a beautiful message:

So we continue on this JA Journey, knowing that God is painting beauty with the ashes and our lives are in His hands.  We ARE finding Him in the storm, and where we are, He holds our hearts.  We can come to Him, find our rest, in the arms of God who won't let go. (from "Just Be Held," by Mark Hall, Bernie Herms, and Matthew West)

Since I last updated this blog, we've had a flurry of activity, putting plans into place, and Anna has had her first Remicade infusion.  No problems, really, so far.  Anna doesn't always like to broadcast what's going on with her life (she wants to be known for who she is as a person--her character qualities--, and not for her diseases), but last week it was time to explain exactly what's going on to the staff at her high school.  She's been missing quite a bit of school for appointments, and will now be missing more because of infusions.  She had just been telling them, "I have health issues, so my absences are necessary."  There comes a time when the people you deal with on a daily basis need a few more details, and it was time.  (I'm SO thankful for the school district we live in---couldn't ask for more understanding staff there.)  She does have a lot to catch up on (not much gets studied or worked on during an infusion day---just mostly sleep).

I feel like some of the pieces of our life's puzzle are fitting together lately (at least as far as scheduling).  The first few Remicade infusions are now on the calendar, and some insurance details have been worked out for Anna's wisdom teeth extraction (they need to use a surgical room for that, because of the structure of her jaw and the way her tongue sits---the oral surgeon feels it's medically necessary, and insurance didn't want to cover that cost at first).  We also decided that we needed to wait until school is out to have that done.  So we now have that scheduled for the week after school lets out (two weeks after the June infusion).  That's helped to know when to schedule her next visit to the orthodontist in Lancaster.  As of right now, I don't have any short-term medical appointments that are up-in-the-air, waiting for another detail to be in place before I can nail down a specific date.   

I HAVE found some definite positives lately:  Anna's eye inflammation is down to a 1+ (while still concerning and not good, it sounds a whole lot better than a 4+!).  I was able to take all of her unused, leftover medications (Cyclosporine, Methotrexate, Leucovrin, Lidocaine for mixing with the Humria, etc.) out of the "Anna's Medication Box" on the counter and put them up in the cupboard for now.  Anna says it's a little strange not to have to remember to take medications at home (besides the eye drops she currently uses).  We are VERY thankful to stop the Cyclosporine.  Anna had a list of side effects that she was experiencing, even after just a few days of taking it.  It's good to find little things to celebrate and be thankful for.  We have NO appointments this week!  That's definitely cause for celebration!!!  

I was reminded this morning of our purpose and goal.  In all of life, in the good and the bad, our prayer is that we remain "a witness to the resurrected Jesus."  (Thank you, Pastor Dean, for those words.)  Because Jesus lives, we can face tomorrow.  We don't need to fear.  We know He holds the future.  Life is worth the living (even when troubles come) because He lives.  (Happy Easter one week late!)

Monday, April 07, 2014

We Have a Plan . . . .

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 . . . .