A Little Rough Patch in the Journey

As Anna continues to hold the reins of control in her medical journey, I am usually now just observing (and praying!).  And she still asks for my advice sometimes---like which doctor should she call---on a Sunday morning, should she call Hershey or just go to Urgent Care?  When the issue in question is the eye, my immediate response is "call Hershey."  Anna woke up this morning thinking she had pink eye.  She did call the Eye Center at Hershey, as the on-call ophthalmologist wanted to see her as soon as she could get there.

She may or may not have pink eye (conjunctivitis).  In fact, the doctor didn't give her any antibiotics.  But he did find some inflammation in the front of the eye (the right eye this time---not the left eye, which has the most complications).  He said that it's very possible the inflammation was causing the itchiness and irritability and redness. So he prescribed some increased Pred Forte drops for the next two days and an appointment to see her retina specialist on Tuesday morning.  Anna has been dealing with a cold virus, which has likely exacerbated her eye issues.

While Anna was driving herself to Hershey and taking care of her medical needs, I was with my small group at church, going over some very wise words from James MacDonald in his "Lord, Change My Attitude" study.  MacDonald was talking about "a specific combination of circumstances that might be stretching us or about something He's allowed to keep us close and humble . . . instead of disrespecting God with [our] complaints, see this as your best opportunity to draw near to Him and let Him provide what you need for the situation."   So that's the perspective we will take with this bumpy stretch of road in Anna's JA Journey.  

I have come to the point where I realize that we have little control over Anna's uveitis issues.  We're doing the best we can by partnering with doctors whom we respect and trust.  The rest is in God's hands.  There are so many little things to be thankful for----that we live within a relatively short distance to the medical center, that as soon as Anna calls and explains who she is, who her doctor is, and her present situation, they say, "Come right now," even on a cold, Sunday morning when the doctor also has to drive to the Eye Center just to see her.  We can be thankful that she drove herself home with no problem, even though her eyes had been dilated (she didn't tell me that until she was safely home---she knows I don't like her driving with dilated eyes).  We can be thankful that she will see her retina specialist in two days, instead of waiting until January 24th (her previously scheduled appointment).  We are very thankful that this is

all happening before she heads back to college this week.  (When she started having some cold symptoms, I told her that if she was going to get sick, at least it's happening about a week before classes begin again, and before she goes back to dorm living!)

Some of you who read this are believers and pray for Anna.  Thank you so much!  The fervent prayers of the righteous are powerful and effective.  In these combination of circumstances, God has indeed provided for our needs in so many ways. I never want to take that for granted.  

Blessings in the Unscheduled Stops in the Journey

"Have you ever noticed how God has a blessing on the unscheduled stops along the journey?"  -- Beth Moore

If you have been following along on our journey, you already know that our summer schedule was discombobulated in June, when our plans for Anna's jaw reconstruction surgery came to a screeching halt.  At the time, it seemed like God was closing the door and locking the door.  So we rethought our plans for the summer and rearranged some things.  We were resting in the truth that God loves us beyond measure and this is part of His plan, even though we don't totally understand. We've learned again how to be flexible with our schedules and take things one day at a time.

As the weeks have passed, we've faced a few obstacles, we've called on our friends and family for prayers for wisdom and guidance along the way, and we have seen God working---creating that "pathway in the wilderness" as Isaiah 43:19 describes.

Our medical insurance carrier changed in July, and that has been a GOOD experience for us! Our previous carrier had denied coverage for Anna's surgery.  The secondary insurance she has through the state was considering coverage of the surgery, but even up to the point where we had to cancel Anna's June 1st surgery, they were still wanting more information and hadn't given the green light.  The surgeon's office has been frustrated with insurance companies lately, as more and more are denying this type of surgery, even after appeals.  The surgeon has had to make some decisions, and now (as of the beginning of July), before the pre-op appointment, his office needs to have approved pre-authorizations in place, or the surgery will be canceled.  Our new insurance approved the surgery---over a week before her pre-op appointment!  And the secondary insurance gave the green light, as well---they will cover what the primary insurance doesn't cover.  They agree that Anna's surgery is medically necessary.  Even the surgeon's scheduler was so relieved when she received that word!  She told me she did not want to cancel Anna's surgery a second time. (Anna's Remicade was also approved by the new insurance carrier---that was also a blessing, because a few years ago when we changed insurance providers, the Humira pre-authorizations took weeks and many phone calls and debates.)

Another issue was the inflammation in Anna's left eye, which had resurfaced in June.  The retina specialist had increased the frequency of the steroid eye drop.  Anna saw the ophthalmologist last week, and we left with smiles on our faces.  Both eyes are totally clear, and the pressures are on the lower side of normal.  I was holding my breath as the pressures were measured, because I was expecting those eye drops to cause a spike in the pressure of the left eye.  Not so!  Huge blessing!

Another huge blessing has been that I have NOT been asked to serve on the jury for the District Court (yet).  I remain "on call" for the month of July, but I don't have to check in again until this next Friday.  One more week, and I am free and clear!  I've gone from week to week unsure of whether I would need to scramble to find family or friends to take Anna to some important appointments.  (Hubby is really busy at work, and family and friends are pretty busy, as well.  I just haven't wanted to inconvenience anyone.)

And so now surgery is four weeks from tomorrow:  August 10th.  We'll continue to take each day as it comes.  Anna has been diligently practicing her bassoon, knowing that she will have a forced hiatus when her teeth are banded together for several weeks.  We have appointments coming up with all but one doctor (the ophthalmologist, who won't see her until early September, since the retina specialist will see Anna less than a week before surgery to keep tabs on the eye inflammation).

Our journey continues . . . . . God continues to refine us on this journey which He has called us to travel.  He is also building our faith as we see Jesus working through the little details and surprising us by removing some obstacles along the way.  We are so thankful for Him and for the prayer support and the loving compassion and care we receive from family and friends.

We Keep Singing . . . . even though it's been a little dark

A favorite author, Cindy Woodsmall, posted a quote today:  "Faith feels that dawn will break, and sings while it is still dark."  We are a singing family, and sometimes the on-going health issues seem to have a darkness about them.  So this quote seems so appropriate to describe the year of 2014 so far.

I'm not feeling particularly eloquent tonight, but this blog needs updating.  I know many of the blog followers want to know what's going on with Anna in her JA journey.  Other JA parents like to know about life with Juvenile Arthritis and Uveitis.  It truly helps to know that none of us are on this journey alone.  We have each other, and for those of us who put our faith and hope in Jesus, we know that He is with us on this journey---no matter whether we are feeling Him or not.  For me, and for Anna, He is the source of our strength---our "strong tower," our hope, our anchor.  Despite everything that has happened these past several months, one of the true highlights of 2014 for Anna was attending the Creation Festival (Northeast)---celebrating our Creator!, and especially seeing and hearing her favorite group, "For King and Country."  She was excited to see the above photo on the Creation website, and she found herself in the picture!

The summer has been busy with trips to and from Hershey at least every two weeks, sometimes even more frequently.  (Plus a few visits to the oral surgeon, and a trip the Lancaster Cleft Palate Clinic as we begin to get her teeth into place for eventual jaw reconstruction.)  Add to that daily Pred Forte eye drops, a dilating drop at night, Remicade infusions (every four weeks), and weekly Methotrexate.  Except that Anna has not had her last two Methotrexate injections, because she developed what would seem to be a small infection from the extraction of her four wisdom teeth and four front molars (that was in mid-June).  Her ophthalmologist sighed a little when we told him that (about missing the Methotrexate recently)---her left eye has maintained inflammation at a 1+ level for the past month at least, with no improvement.  While we are so thankful that the eye is not worse, we're getting a little uncomfortable with the duration of this level of inflammation, and the negative effects it's causing for her left-eye's vision.

I've talked to God a lot about all of this!  He has answered.  I've heard Him---with loving whispers from Him, songs and peace and assurances that we can trust Him for the entire, big, beautiful picture, despite the fact that He's not planning a sudden, healing miracle in the near future (I got that message from Him, too).  So we continue to sing, praise Him in the storm, thank Him for protecting Anna in many ways (her brother ended up with a bacterial infection at Creation, but Anna didn't!, and she hasn't experienced a whole lot of really negative side effects from her various medications so far).  I also pray for her doctors a lot (and thank God for them and the wisdom and intelligence He has given them).

And when the worrying seems to get a little heavy at times, I remember the lines of a Newsboys song from their "Adoration" CD:

Lord, I don't know where all this is going, or how it all works out.
Lead me to peace that is past understanding; peace beyond all doubt.

"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!)