Sunday, July 19, 2015

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.

Monday, June 15, 2015

Well, hold on---the road may get a little rocky . . . . .

Anna reads a book while waiting for the retina specialist
We had an appointment with the retina specialist today.  She monitors the macular edema, which hasn't been a problem for months (thank the Lord!).  Anna had seen the ophthalmologist almost three weeks ago, and he saw only "trace cells" in the left eye. Today, I think (and the retina specialist believes) that Anna's weeks off Methotrexate and a prolonged span between Remicade infusions (because of the upcoming and then postponed surgery) has caught up with the eyes.  There is a "dusting" of white cells around the cornea. (She let me look at them through the lens she uses with medical students and residents---that experience was simultaneously interesting and dismaying---because of what I was seeing.)  The answer is not simple, because of the postponed surgery, scheduled for August 10th.  Anna started back on Methotrexate last week, but will have to take a break from it again closer to the surgery date.  We will schedule Remicade for sometime in mid-July and then again about two weeks following Anna's surgery.  Anna is to increase the frequency of both the Prolensa and the Pred Forte eye drops for now.

I've heard many wise mentors ask people, "So what has God been saying to you lately?" And because I've heard that question asked throughout the years, I've worked to listen carefully to what God is saying to me (just in case someone asks!---and besides, I want to know!!!). I had a lot of time to listen this morning, because at the crowded Eye Center at Hershey Medical Center, there is a lot of waiting time.  (We arrived at 8:30 a.m. and left at noon---sometimes I've thought they should provide treadmills for patients and parents, so that we're not constantly sitting or making people nervous by walking around in small spaces!) A few things came to mind today.  I recently heard or read that if we truly knew God and who He is, we would never need to fear anything at all.  I was thinking about this before the eye exam, and that was a good thought to be meditating on.  And the song in my head this morning (all morning---before and after) was Colton Dixon's song "Through All of It."  I'll post a video below.  And on the way home, on the radio, a song reminded me that "God is in control."  He truly is our anchor---our steady rock, when the road gets a little bumpy.

I know so many people are praying for Anna and for us.  Thank you!

Thursday, June 04, 2015

What a Difference a Week Makes . . . . .

Family, friends, and many people we don't really know all that well have been praying for Anna and for us, especially this past week.  People we do know and see have been asking how she is doing, and I'm happy to say MUCH BETTER!  As Anna's ear and sinus infections have been improving, the jaw stiffness and pain which was so concerning has gone away. So now we're not certain whether the stiffness and pain was a bout of active arthritis, or a result of her infections causing pressure against her jaw, or what.  Did it go away because the infection is receding?  Or because of the power of prayer?  Or both?  Maybe both.  For whatever reasons, we are so thankful for your prayers for us.  We can feel the peace and calmness in the midst of a total change of our schedules---peace replacing the worries.  We've been able to find the good parts of rescheduled surgery, like Anna being able to take her finals on schedule (I really was worried about her taking them later but with the fog of anethesia, as I've experience after past surgical procedures.)  Only one more to go as of tonight!  And then her summer vacation begins!  She will be able to help at the high school graduation next week, as well!  She has a lot of friends who will be graduating in the class ahead of her, and she is glad to help and be a part of their special evening.

We have a tentative August date for surgery, but no confirmation yet.

Thank you again for your prayers.

The video below is so fitting for us.  I love how God provides songs that are so appropriate and timely for us as we travel this journey of life.  Our help HAS come from Him.  He HAS pulled us through (and will again when we need it).  He is our rest and our refuge, and we know that He has carried us on His shoulders.



By For King & Country
When confusion's my companion
And despair holds me for ransom
I will feel no fear
I know that You are near
When I'm caught deep in the valley
With chaos for my company
I'll find my comfort here
Cause I know that You are near
My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders
You mend what once was shattered
And You turn my tears to laughter
Your forgiveness is my fortress
Oh Your mercy is relentless
My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders
My help is from You
Don't have to see it to believe it
My help is from you
Don't have to see it, cause I know, cause I know it's true
My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders
My help is from You
Don't have to see it to believe it
My help is from you
Don't have to see it, cause I know, cause I know it's true
Songwriters: Ben Glover, Joel Smallbone, Luke Smallbone, Tedd Tjornhom
© Warner/Chappell Music, Inc.
For non-commercial use only.

Thursday, May 28, 2015

A Tough and Miserable Day

Due to circumstances beyond our control, Anna's scheduled jaw reconstruction surgery for June 1st will need to be rescheduled to a later date.  And due to the surgeon's schedule and my schedule, it will probably have to wait until early August.  I should be hearing from the scheduler either tomorrow or Monday to receive a date.  

Over the past week, Anna developed a cold---a nasty virus, similar to what her brother had the previous week.  We continued to evaluate her symptoms, hoping that they would all go away in seven days.  I also called the surgeon's office on Tuesday to let them know what was going on, and continued to pray for guidance, wisdom, and a definite answer (and not a decision we would be second-guessing later on).  

Today we got that definite answer.  Anna now has a raging ear infection.  (The doctor asked, "Have you ever had an ear infection?"  And as we were responding with a 'no,' he exclaimed (as he examined Anna's inner ear),  "Well you've got one now, and wow, is it bulging!"  By that time (mid-morning) we had already heard that the surgeon thought it best not to proceed with Anna's surgery, given her cold symptoms that I had called about on Tuesday.  When we talked about Anna's cancelled surgery with the family doctor, he agreed that there's no way Anna should have surgery now or in the near future.  She also has a sinus infection.  Anethesia would be difficult and risky with her sinuses being so inflamed.

It's been a tough day.  Even though we knew that there was a chance that surgery would be postponed, this is a mental and emotional adjustment for Anna---especially on a day when she has two infections and is feeling just miserable.  

The GOOD news is that we saw her ophthalmologist, and her eyes are basically clear. (Such a relief, since Anna has been off Methotrexate for about three weeks now, and cannot resume until she feels significantly better, as per the pediatric rheumatologist.)  She's been having increased jaw stiffness and pain, and I let her pediatric rheumatologist know that, as well.  Anna is on antibiotics for the next five days. 

This change of schedule means that Anna can now take her finals during finals week, and she may very well be able to attend graduation to see her friends receive their diplomas. (She is a junior, and has one more year of school left, but she has many friends who are seniors.) 

Sunday, May 24, 2015

". . . This is the Way; Walk In It." Counting down the days to surgery

We have had many appointments since I last posted on this blog.  I've been remembering that one of my main purposes for keeping this blog is for other parents of JA children and teens---providing a glimpse of our lives so that you can have hope for your future, as well, and know that even when challenges come, they do not have to overwhelm you.  It's time to update this blog!

Anna will have jaw reconstruction surgery one week from tomorrow:  June 1st.  The whole process of getting to this point and coming up with the date seemed like a whirlwind at the time. Between our schedule and the surgeon's schedule, plus some upcoming changes in our medical insurance (changing carriers as of July 1st, which for surgeries or other procedures, means days or weeks of jumping through hoops for pre-authorizations), I was praying fervently for guidance and peace and God's direction in scheduling the surgery. When we met with the doctors at the Lancaster Cleft Palate Clinic in April, and we all "laid our cards on the table" as far as scheduling, everything suddenly fell into place for June 1st. This (as in feeling like we're being carried along in a good draft instead of bucking a headwind in our journey) continues to happen as we get all of the other pieces into place. As I pray about complicated situations and details fall into place with an overwhelming sense of peace, I have learned to take that as confirmation that we are going in the right direction.

Since establishing a surgery date, Anna has had several appointments, including a 2+ hour appointment at the Lancaster Cleft Palate Clinic, to get molds done and x-rays taken, and a particular kind of wire inserted through the brackets on her teeth---the wire has little loops between the teeth, which will be necessary for the surgical process, so I understand.  I love that the people at Lancaster Cleft Palate Clinic explain a lot of "whys" as they do things. They take all of those molds (one of the most dreaded things for Anna) because the plastic surgeon practices the surgery on the molds before Anna will have the surgery done.  (I love that!!!  That comforts me---no one will show up to the OR and start cutting into Anna's jaw and say, "Hmmm---wonder what we should do now?!")  We had to have a few more x-rays taken before they let us go, because they needed to be just right, with Anna's mouth in just the right position, so that the surgeon can use them to measure and calculate adjustments which will be made.

There was one measuring instrument that really had me thinking.  I should have taken a picture of the contraption, because later when I tried to describe the thing to the "Bing" search engine to see if I could find an image, I failed!  I knew Anna wouldn't want a photo of them taking the measurements (the procedure of taking this measurement was not attractive, but very necessary).  It's difficult to describe---a contraption of metal and plastic pieces.  A wax piece went in Anna's mouth as a reference to her bite (as she stood up straight with her back and head against a wall).  A plastic piece rested on the bridge of her nose.  Two metal rods with earpieces on the ends went into her ears.  The orthodontist was explaining why they use this (as he was dictating several measurements to his assistant).  He said that since the plastic surgeon is going to be cutting and moving Anna's jaw, he will need a point of reference on Anna's head---and they use the ears and the bridge of the nose, because even as they move the jaw, the bridge of her nose and the position of her ears will not change.  They will know how far and where to move her jaw in relation to the location of her ears and the bridge of her nose.

I love analogies, and I see one here---an analogy for life.  Life is full of chaos and change.  It's just how life is.  In the midst of chaos and change---in order to make sense of life and get ourselves through the storms that come, we need a point of reference---a "north pole"---an anchor.  Know what I mean?  I am SO thankful that we have this, as we know our Creator---we belong to him because of Jesus.  And He has given us the Holy Spirit and His Word so that we can walk in truth and know comfort and peace.  Do you have a point of reference in the midst of chaos and change?

The past two months have not been without reflection and processing a lot of information and our feelings about it.  When we sat in the exam room of the plastic surgeon and the resident was explaining exactly what they are planning to do (using one of the molds of Anna's teeth as a visual), the information seemed a little daunting.  When I think about "option 3" and tell people about it, I cringe, and they cringe.  When we met with the PA for Anesthesiology, he looked over Anna's health history, asked questions, and commented, "This is serious stuff, here."  So, yes.  This will not be a walk in the park.  Yes---there have been thoughts and emotions to sort through (sometimes it seems like it's been more that way for me than Anna---she seems almost eager to have this done).  Anna is also taking a break from medications until mid-June, so in the back of my mind, that's a concern, but there's no going back now---just moving forward.  If her joints or eyes flare in the next few weeks, we'll take that and deal with it.  What else is there to do?

I've been meditating on a recent quote from Beth Moore, which seems appropriate for the coming week or two:

"Trust God for your current life circumstances and believe that He has called you this day to be courageous." - Beth Moore

So we'll gather up our courage and thank you all for your prayers for us.

Friday, March 27, 2015

I Surrender All . . . . . . . .

We recently sang the hymn "I Surrender All" during a worship service, and those words took on a deeper meaning for me than they have in the past---really resonated this time more than others, and maybe in a different way than usual.  These past few months, as we have begun to look to the summer, I've come to the place where I've truly HAD to surrender all my tendencies to make plans and get all my "ducks in a row."  And it seems like the more I felt that I was being successful in being flexible and trusting that "God's got this!" and that He'll work out all the details I can't control (as He's been faithful to do in the past), more and more variables continued to get dumped into the bucket of "stuff" in regards to making plans, organizing our calender, and keeping all of those spinning plates balanced and rotating.

This coming summer, Anna's last summer before she graduates from high school, she will have jaw reconstruction surgery (necessary because of the significant damage caused by arthritis).  We've been talking about this for awhile (probably over 18 months), but now it's getting closer---like REALLY close.  We don't yet have a date for surgery, but we have an appointment with the team of doctors from the Lancaster Cleft Palate Clinic to discuss Anna's orthodontic progress, her readiness for surgery, and hopefully get a specific date. We're hoping for June, after school is out.  (The orthodontist and director of the clinic thinks that June is a good target time--but Anna also needs confirmation from the plastic surgeon who will be doing the surgery.  His staff will schedule the surgery date.)

We were very glad to make that "team" appointment for the first full week of April, even though it meant adding one more appointment to the three already scheduled for Anna that month. And then I checked the mailbox in late February, finding a summons from the District Court in Harrisburg, advising me that I would required to be available for jury service for the entire month of April!  Now that's a game-changer!  Nothing like making an appointment to get a lot of answers to some really important questions, and then being told you probably will not be able to go! I just found out this evening, though, that my jury service has been deferred until July!  (Thanks to a great letter from Anna's pediatric rheumatologist to the court.)

More details continue to be clarified, thankfully.  We were thinking our insurance coverage may change (and we run on a fiscal year with that---July 1 - June 30)---and it is (we just found that out today), but in my view, it's a GOOD change---going back to a carrier which we've had before.  I liked them, more than the company we are currently working with. But that will mean a lot of scrambling and making arrangements for coverage for Remicade infusions and post-op appointments.  But at least we'll still have insurance, and from a reputable company.

There are still some things we just don't know, and we won't know until after the surgery.  Like---will Anna be able to play the bassoon again?  Definitely not for several weeks after surgery.  And then it's probably going to take some hard work to get her mouth muscles back into shape to play.  We'll just have to wait and see.  God has blessed her with a talent there, but I have no clue what the future will hold with that.  It's one area where we need to say, "I surrender!  I just don't know! . . . "  And continue to trust and to know that our future is in His hands, and we follow Jesus step by step to see where He leads us (bassoon or no bassoon).

Another unknown---I know (because the plastic surgeon told me this 18 months ago), that Anna will need to be off Methotrexate for awhile, as she heals from surgery.  But what about the Remicade? (I'm sure they'll tell us next month.)  And when she goes off the Methotrexate (if not also the Remicade) temporarily, will her uveitis flare?  I just don't know.

For a person who likes to plan and get all puzzle pieces into place so I can see the big picture, all of these "unknowns" could be a little unsettling.  But Jesus continues to provide us with peace in the unknowns.  We've been doing a lot of "laying it down and letting it go" these past few months, and we're watching as the answers fall into place, one by one.  I continue to LOVE the group Casting Crowns, and their song which talks about surrender (I've probably quoted this before!):

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down, and let it go


Tuesday, January 27, 2015

Unexpected GREAT News!

Well, many of you know that we experienced several weeks of thinking about worsening macular edema, possible solutions with definite risks, and wondering how we were going to juggle an increase in appointments in Hershey (that comes with the territory whenever the eyes have issues).  And then, as my last post discussed, the threat of a snow storm on the morning of Anna's appointment which had already been rescheduled twice.  I've been having constant conversations with God, asking for wisdom, and as the first chapter of James tells us, thanking Him, knowing that He will give wisdom abundantly when we ask!

We ended up with a family adventure---drove to Hershey (in light rain) and camped out at a hotel overnight (I never knew that this hotel offered a flat rate discount for patients of Hershey Medical Center!  That was so nice---it pays to be a little chatty when you make inquiring phone calls)  Even though the storm was not as severe as predicted, it was nice to have a complimentary hot breakfast at the hotel (slow, quiet night and morning at the hotel---there was only one other couple in the large dining area), and to only travel about three minutes over to the campus of HMC.

We explained the recent history to this retina specialist (only the second time we've seen her), including the major concern three weeks ago, when Anna's visual acuity was tested (and found to be problematic) at the ophthalmologist.  We had an OCT done, and it's amazing!!!  That OCT (an ocular CT scan---it takes photos of the back of the eyeball) is the most normal OCT I've ever seen of Anna's eyes.  Whatever problem there was three weeks ago (and there was, indeed, a problem, and Anna said then that she had noticed a change since Christmas) is gone.  Wow!  Awesome!  so instead of talking about the not-so-great options for treating macular edema, we can cancel next week's appointment with the ophthalmologist (and reschedule for six weeks from now), schedule the next appointment with the retina specialist for late April, and talk about the short-term goal of getting Anna totally off the Pred Forte drops, using Methotrexate and Remicade to keep things under control.  (Of course, we can call and get in to see either doctor if Anna notices any adverse changes.)

I have a tendency to over-think anything and everything in life.  And it's easy to do so now.  Is this a miracle?  I have no idea.  The doctor said that macular edema can come and go (I had no idea that it could go away THIS quickly!).  Why has God allowed this to go away now and not anytime last year?  I have no idea!  I'm all for accepting that God allows things in our lives to refine us and to help us grow and mature.  I have worked to accept that.  For whatever reason that we have this wonderful turn of events, I am so grateful and inwardly dancing with joy and thanking God over and over that our lives are not going to become even more complicated in the next few weeks with added appointments and treatment options.  If I use the analogy of trying to keep a row of spinning plates balanced and spinning, I can say that I feel like someone has removed one plate---one less plate to spin, and that is a HUGE relief.

We are so grateful for the prayers and support and encouragement we receive from so many friends and family.  We're thankful for you, and so glad that we can share great news that we are on a easy road at least for now (jaw reconstruction surgery is still on the horizon for early summer).

For today, we are joyful.  We are smiling.  We are laughing.  And we're laying down some of our concerns.  It's been a good week so far!

Friday, January 23, 2015

Accepting that which we have no control over . . . . . (and praying fervently)

Our plans to see the retina specialist hit a major speed bump, when said doctor got called into surgery this past Tuesday, the very day when Anna was supposed to see her.  I am not always a patient person.  In my mind, macular edema is a problem, and I just want to know (sooner rather than later) what our plan of action is going to be.  This is the second time an appointment with this specialist has been cancelled and rescheduled.  As I thought this change of plans through, I made sure to tell the scheduler that Anna's ophthalmologist  thought that Anna needed to see the retina specialist soon, and was even concerned that Tuesday's appointment was not as soon as he would have preferred, and that this is the second time we've been asked to reschedule.  The very best the scheduler could do is to make an appointment for this coming Monday at 8:00 a.m.

And now our local weather people (the ones who have a good handle on forecasting weather---the ones I trust the most!), are thinking that the morning commute on Monday is going to be a problem (snow Sunday night into Monday).  I'm still looking at all the pieces of this puzzle and figuring out what to do.  In my mind, rescheduling is not an option.  It's challenging to get an appointment with this doctor.  We have 20 miles to go, but on snow-covered roads, who knows how long that will take!  Maybe spending a night at a hotel in Hershey on Sunday would be the best option.  By the time Anna gets finished with the appointment (anticipating at least one test---an OCT, I'm certain), the roads will probably be much better.  I did call the Hershey Eye Center today, to see if they ever cancel appointments because of weather (didn't want to waste the time and money if the appointment would end up being cancelled by them anyway).  She said they never cancel for weather-related conditions.

We shall see what this weekend brings.  And we will get to Hershey on Monday morning.  On the bright side, maybe school will be cancelled on Monday, so Anna won't miss any classes!

I am confident that God is sovereign over those things I cannot control.  I've done everything I know to do within my boundaries.  (Really, it is not in my nature to scream and yell at the schedulers---this is not their fault, and it's not the doctor's fault that she was called into surgery---someone really needed her more than Anna and other patients needed her on Tuesday.)

Casting Crowns has a song called, "Already There," which helps me have some peace when there are so many circumstances beyond my control, and I can't see how everything is going to work out:

"Already There"

From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control

Oh, oh

When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

Oh, oh, oh, oh

From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit . . . . . 

Sunday, January 11, 2015

Realities of the Journey . . . . .

Oh, my!  In the last two and a half months since I last updated this blog, I've thought many times about an update, and most specifically, a title.  Many title possibilities have crossed my mind, and from late October to the present, the gist of the title has certainly changed.  Here are some of the options, which will give at least a little summary of the roller coaster journey:

Not a Fan of Oral Prednisone!
When we returned from Boston, Anna had been on oral Prednisone for about a week or two.  But side effects began surfacing.  Her thought processes were in a mess, and her emotions were very scattered and a bit crazy.  We were in touch with her rheumatologist, and he gave us a faster taper schedule.  The good news about the Prednisone:  it cleared up whatever was causing Anna prolonged pain in her one big toe.  That hasn't returned.

Truly Thankful at Thanksgiving
Anna had an appointment with the local pediatric ophthalmologist just before our Thanksgiving holiday.  Her vision was 20/20.  No inflammation, although the doctor described a "haze" or a "flare" being present --- no actual cells floating around.  What he described is like a haze of humidity/steam after a summer rain---the moisture is still in the air until a front comes to blow it out to sea (we live on the East Coast, and that's how many of our weather patterns occur---it's what I'm familiar with).  He wasn't worried; he was actually very pleased.  Anna had also seen a new doctor---a retina specialist at Hershey Medical Center, who will be monitoring Anna's macular edema issues.  A new OCT (imaging of the eyeball) at that appointment showed that the macular edema had improved since her last OCT.  Good news!  The retina specialist basically said let's not change anything right now, since she's improving, and we aren't exactly sure which latest change in her medications we can attribute the positive changes to.

Anna also saw the pediatric rheumatologist just after Thanksgiving.  Joints remained quiet, and he was pleased with the reports on the eyes.  Anna was in a negotiating mood.  She had previously talked the ophthalmologist into allowing her to stop the dilating drop she was on---he said okay, although he couldn't promise that she wouldn't ever have to use it again.  And then she was cheering when the prednisone taper was rushed.  Since the doctor brought up the idea of maybe trying to decrease Methotrexate a little, Anna asked if she could switch back to the oral Methotrexate instead of the injectible (she has psychological issues with the shots).  He agreed.  We stayed at the same dose---just a different form, knowing that the injectible Methotrexate is probably more effective than the oral.

I always try to be thankful, even in difficult circumstances, but for Thanksgiving 2014, it didn't take much effort to come up with things to be truly thankful for.  We were counting our blessings, indeed!

Feeling Good Towards the End of 2014!
or A TRUE Holiday!
I often spend time reflecting when a year comes to an end (it's always good to take stock of where you've been and where you're going, I think!), and after Christmas, as we moved toward a new year, I was thinking how challenging 2014 was in so many ways.  This JA Journey in 2014 seemed like a hike up a high, rocky, tough mountain.  But I kept thinking that at the year's end, we seemed to be nearing the top of the mountain where the view is really great---sometimes AWESOME if the weather is just right.  I wasn't juggling my work schedule and projects with doctors' appointments as much; Anna was able to attend school fairly regularly, so she wasn't getting behind in her school work.  I was "breathing a little easier" as far as Anna's health issues go.  I was taking a break from replaying in my head doctors' thoughts, theories, and opinions (lots of variation there!) to decide which one I trust most and agree with for Anna's overall health's sake.   The holidays (Thanksgiving, celebrating the birth of Jesus, and celebrating the new year) were not just holidays in name only---I felt like we had been given a true holiday from health issues (once Anna had her Remicade the week before Christmas and my son had his wisdom teeth removed the day after that---we put all health stuff on the back burner to celebrate Christmas and some time off to spend with a whole lot of family and friends.)

And then we arrive at 2015---a new year, with only the knowledge that God walks with us wherever we are.  He sees and understands.  He's already in our future and knows how all of the pieces will fit together once the big picture is done.  There are a whole lot of options for a blog title to begin the new year:

Navigating the bumps along the way
Finding the joy when troubles come our way (from James 1:2-4)
Developing our character and endurance (from Romans 5:3)
Sometimes, during our drive to Hershey in 2014, Anna would warn me when she thought a visit to the ophthalmologist may not be a good appointment, because she knew something was going on with her vision that was not good.  She forgot to mention anything to me this past week as we made that drive which has become so familiar.  So when she was taking the vision test and couldn't really see the larger, circular letters, I realized that our "holiday" was officially over.  Reality has set in once again, and we choose to deal with the realities.

Although the local ophthalmologist doesn't have the equipment to do an OCT in his private practice (that's why we've added a retina specialist at The Eye Center at Hershey Medical Center), he used the equipment he does have to see as much as possible into the back of Anna's left eye, he could tell that it's different than the right.  Just the vision test itself gave me a good indication that the macular edema is a problem again--that's it gotten worse than it was in October.  Dr. M. asked Anna when she first noticed a change for the worse in her left eye vision, and she said right around Christmas time.  I later asked her why she hadn't mentioned anything to me, and she said it was very gradual, and she just forgot to mention it, and she knew she had an appointment coming up soon, anyway.

The bottom line and most probably cause of this decline:  at Anna's appointment in November, she was probably still benefiting from the oral Prednisone, which she had just finished taking.  Those effects have worn off.  And Anna really does NOT want to go back on the oral Prednisone.

So where do we go from here?  We'll see what the retina specialist says on the 20th.  (I really do like her.)  Time for various thoughts and statements to swim through my head now as we wait for Dr. N's opinion.  Anna was not able to tolerate Sulfasalazine (problems within the digestive system many years ago when she was 4 or 5), but two of the doctors are wondering if she would be able to tolerate Diamox (a sulfa-based med), which is normally used to treat macular edema---they are considering that.  Dr. Foster has prescribed Prolensa drops, which Anna continues to take, but one doctor says that prescribing Prolensa for Anna's macular edema is like sprinkling water on a raging fire.  It's not going to do much at all.  He doesn't know what Dr. Foster thought that would help.  (Anna's macular edema had improved a bit by the time we were in Boston---it wasn't nearly as bad as it had been in August.)

Our worship service speaker this morning spoke from the book of James, first chapter.  A few years ago, I started memorizing that book (only got to the first 12 verses before life got in the way of memorizing Scripture).  But I love how the Lord seems to speak directly and clearly to me when it's time to face some big and hard realities of life (even more so than when life seems fairly carefree).

"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow.  So let it grow, for when your endurance is fully developed, you will be perfect and complete in every way, needing nothing."  James 1:2-4 NLT

He allows these circumstances because He knows that when our faith is tested, our endurance has a chance to grow.  Endurance is a foundation for character.  And character produces hope.  (from Roman's 5:3)

I may have quoted Victor Frankel before, from "Man's Search for Meaning," which all of my Messiah College alumni friends (from my years in college, anyway) will be familiar with---we had to read it for one of our general education courses.  We may not be able to choose our circumstances, but we can choose our attitude.  Victor Frankel spent time in a concentration camp, and yet he still chose his attitude.

We may be at the foot of another tall, high mountain for the coming months of 2015, but we'll choose to keep our focus on the bigger picture.  Until then, we carry on with life, not letting the realities of JA and uveitis and macular edema consume us.  Anna just participated in District Band this past weekend (beautiful concert of gorgeous band music), and she has County Band and County Orchestra coming up in the next few weeks, as well as playing the bassoon in the "pit" for the high school musical, "Peter Pan" in March.   We love staying connected with family and friends, and appreciate the love, support, and understanding we receive from them---we are surrounded by a great support system.  We "keep on keeping on."  Life is still good.  God is still good.  His plans for us are good.  We know that, and we trust Him.

Sunday, October 12, 2014

Boston Review . . . .

view from Dr. Stephen Foster's waiting area

Our trip to Boston has confirmed that we are definitely "small-town girls" at heart!  We love visiting big cities, but prefer the slower pace and more open spaces of our area.  (And we love living in a valley, with mountain ranges on both sides of us.)

I hardly know where to begin with an update.  Maybe I feel a little bit of pressure, feeling that some (with limited understanding of Anna's issues) may hope for us to have received a quick fix or a brilliant answer from God above revealed through this appointment.  I've learned over the years to "manage my expectations."  In fact, I try to go into many appointments with no expectations, having learned that what I thought I might hear and what I thought might happen are usually NOT what I hear and not what happens.

Because of my continuing conversations with Jesus, I know deep in my soul that He guided us in this direction.  That is not to say that I didn't have concerns--mainly about where we would stay without paying more than our monthly mortgage to stay just two nights and then once I found a decent hotel for a reasonable price---I kept asking Him how in the world we were going to get where we needed and wanted to go, since we were outside the city and not all that close to a "T" stop! (I did NOT want to drive a rental car through Boston and pay all the parking fees which would come with that.) Now those issues were where I saw brilliant answers from God!  We met such helpful people along the way, and it turns out that the hotel we stayed at provided 24/7 shuttle service to the "T" stop and to the airport.  Our shuttle drivers were such a blessing and were so kind and nice.  They also gave us a chance to rub shoulders with the local people---I LOVE to do that whenever we go anywhere---I prefer doing that than to visit tourist attractions.  (AND, God "sang" to me via Casting Crowns songs playing in my head continually, each and every day in Boston---some of the songs I've quoted in previous blog posts--we KNEW He was walking with us with every step.)

So . . . . why did we make the trip to see Dr. Foster?  When we first thought about it (and talked to Anna's pediatric ophthalmologist), it was because she had significant inflammation since January, and I felt like we were spinning our wheels, and her vision continued to get worse (just in the left eye, thankfully), even when the inflammation was finally quieting down.  As indicated in my last post, we figured out that the vision issues were being caused by Macular Edema, which is usually treated by Diamox, unless a person is allergic to sulfa drugs, like Anna.  Anna's doctors in Hershey decided to try an oral Prednisone taper (thinking that maybe this would take care of the Macular Edema.)  They were thinking that Dr. Foster might want to do an injection to the back of the eye, which is not without risks, and they wanted to see if this would help before we had to resort to that. 

Good news---because Anna has been on Prednisone, the left "anterior chamber" (correct medical term) was totally clear of inflammation---has been for the past week or so---for the first time since January 2014.  AND, the extensive testing completed at Dr. Foster's office revealed that there has been significant improvement in the swelling of the macula.  I find that doctors don't get overly excited about Prednisone, though---because staying on it long-term is not good (too many side effects), and once a person stops taking it, the problems can come back. 

The tests done at Dr. Foster's office included a "Fundoscopic examination," which was very interesting.  The technician injected a vegetable-based dye into Anna's vein, and then took photos.  The dye enhanced Anna's blood vessels in the pictures.  The "fellow" we had with us on Friday was very nice, and she showed the photos to Anna and me, and explained them to us.  They do show that Anna's blood vessels in that left macular are still "leaking" a little bit---that's what causes inflammation, she explained (and it's fascinating to see the difference between the right eye and the left eye).

Dr. Foster listed four options to treat the macular edema.  He gave us a sample and a prescription for Prolensa--an eye drop--but he told Anna she would need to take it twice a day "without fail," for probably at least 2 1/2 years.  The other options include "sandostatin," which is an injection, I believe, into the buttocks (long-term, and I think he said maybe daily? for several years); "Retisert," which would be an implant to the back of the eye (that would be more long-term than short-term, as well), or "intravitreal avastin" (the injection to the back of the eye).  Both Dr. Foster and the fellow, Dr. Li, cautioned that the Prolensa is very expensive.  I haven't taken that to the pharmacy yet (since we have a sample), but I'm really hoping that the supplemental insurance through the state will cover what our primary health insurance does not. 

Since it's unrealistic for us to take regular trips to Boston for follow-up care, we will continue to see the pediatric ophthalmologist we always see, as well as a retina specialist at the Penn State Hershey Medical Center (so that she can monitor the macular edema with OCTs, etc.).  And of course, we continue with the Remicade treatments every four weeks.