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


Read more at http://www.songlyrics.com/casting-crowns/just-be-held-lyrics/#8dVSJqQLcT7IzIHX.99

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.

 

Monday, September 15, 2014

"Something Is Just Not Right!" -- on the road to some answers


For some reason, I've always loved the book, "Madeline"  (by Ludwig Bemelman). Remember when Miss Clavel woke with a fright and said "Something is just not right!"?  Some people have intuition like that.  I sometimes do!  (My husband recently said he needs to learn to trust that intuition, because in many instances, my intuition is right!")

For weeks (maybe months) now, Anna has been saying, "Something is not right!" with her vision in her left eye.  She has mentioned this to the ophthalmologist on several occasions (we've been seeing him at least every two weeks since January) and has explained to him in detail how her vision is different out of her left eye.  He has listened well, and tried a few things (thinking that maybe she had some near-sightedness going on there---but that didn't pan out).  I remember that in the spring, he also dilated her eyes again to make sure he wasn't missing anything.  But all along, her inflammation had been hovering around a 1+, and she had clumps of white cells sticking to her cornea.  So he attributed her issues to those factors.

So many people (including many of you!) have been praying for Anna.  THANK YOU!  Our pastor has been recently praying for her doctors---for creativity to help them figure out how to help Anna.   I've been so thankful for her doctors and the care they give Anna and their wisdom and intelligence that I believe God has blessed them with.  Today we had another appointment with the ophthalmologist.  I was expecting another routine appointment---check the level of inflammation, chat a little about the upcoming trip to the specialist in Boston so that we're all on the same page and so that I have all the background information I need (summary of care) to hand to Dr. Foster in October, etc.  Anna's visual test on that left eye was not the best (not too much different from other appointments).  So the doctor went ahead with the slit lamp examination and found that the right eye is totally clear (as it has been), and the left eye inflammation is down to "trace cells."  With no clumps of white cells sticking to the cornea.  That was the good news.  The bad news was that her vision STILL was not right (and he was thinking that it should be with the "trace cells.")  It should have improved, anyway.  So now the doctor is thinking, "Something is JUST not right."  

He dilated Anna's eyes and examined them more thoroughly.  He was beginning to suspect that she has Macular Edema (swelling of the back part of the eye).  He sent us over to the medical center to get an OCT to confirm his diagnosis.  The photographer explained the images to Anna and me (we were asking a lot of questions---the differences between the right eye and the left eye were blatant---I could see it as soon as he moved the camera from one eye to the next.  He did give us a disclaimer about him being only a photographer and not a doctor---but he's been doing this for 20 years and has a good understanding of the images on the screen). 
right eye (what the doctor sees when he
looks at the back of Anna's eye, and a
cross section.  (This is the normal eye.)
This is the left eye---this is what swelling
in the back of the eye looks like.





















Our reactions to the images have been interesting.  For Anna and I, I think we were feeling validated that yes, something is different.  For Scott (my husband), his reaction to the images tonight was one of compassionate dismay.  Both responses are appropriate, I think.  I'm so sorry that this is happening, but so relieved that we finally know what's going on.  Sometimes I have fleeting thoughts of "Why didn't we figure this out sooner?"  But I'm reminded that God's timing has been perfect in the past, and it continues to be perfect in the present.

It was such a long day (so much more time spent in Hershey today than we anticipated), and we just wanted to get home (and in time for Anna's bassoon lessons, and for her to touch base with a few teachers about what she had missed in school today).  I don't exactly know where we go from here (except another appointment with the ophthalmologist on October 1st, and the appointment in Boston on October 10th).  But I am relieved that finally it's more than Anna and me that is saying, "Something is not right!"  (Something besides the inflammation.)

Tuesday, September 02, 2014

Taking More Steps . . . . .


If you read my blog regularly, you know I usually have songs running through my head all the time!  I figure it's the soundtrack of my life.  The songs for this part of Anna's JA Journey are the same as some in the past.  Focusing on Steven Curtis Chapman; specifically his "Take Another Step" song that I've quoted before:  "Take another step, and another step, when the road ahead is long, and you don't know what to do---take another step . . ."

My conversations with the Lord are constant, but last week, my conversations with Jesus were more frequent and fervent.  Anna was seeing both of her doctors within two days of each other, and we had already resolved with the ophthalmologist that if there was no significant change in Anna's left eye by this week, we should make plans to see a uveitis specialist.  Anna had shared with me (at length as we drove home from an appointment two weeks ago) her concerns about the vision issues in her left eye.  The ophthalmologist had already explained his conclusions for why she's having the vision issues (she described them in detail to him at one appointment).  His thinking is that once the inflammation goes away and she no longer needs the dilating drop, her vision should clear up again.  I think Anna is getting tired of waiting for that to happen, and two weeks ago, the inflammation had decreased (at the appointment on Friday, it went back up to 1+), but her vision had not improved.  More frequent and fervent talks with Jesus (on my part, and I think on Anna's part, as well.)

So this week has been a turning point week---when we decide which steps to take in our journey.  Over the past few weeks, we were presented with two different options for a specialist to see.  My talks with Jesus involved entreaties for wisdom!  I once heard that to intentionally follow God's will often means doing the next wise thing (when He doesn't send down an e-mail from heaven, as I often long for Him to do!).  So while Anna was receiving her Remicade infusion on Friday afternoon, I began to make phone calls.  The wisest choice seemed to be the specialist in Philadelphia.  (The trip would be shorter, and cheaper, and the specialist is nationally known, and recommended by the pediatric rheumatologist.  We're familiar with the Wills Eye Institute, since my mom was treated there for ocular melanoma years ago.)

What seemed to be the wisest choice ended up being a closed door.  (I like closed doors sometimes---then it's easier to turn away and go to the other open door, instead of agonizing over the choice between the two.)  To get an appointment with the doctor in Philly meant a six-month wait (unless the doctor deemed otherwise, but he's away for two weeks).   Six months?!?!  Anna has had chronic uveitis (usually at 1+ inflammation or more) for the past 8+ months.  I don't want to wait another six months for some answers.  So I called Dr. Foster's office in Boston.  They could have made an appointment for September, but we decided on October instead, since Anna has a few days off school in the middle of the month.

Since we have to be on this journey, at least we can have
some adventures along the way.  I like Boston!  Anna doesn't remember our visit there in the summer of 2001---she was too young.  So she is eager to go again (and pinning some tips and places on Pinterest!)  I like to fly---and we're choosing to fly up and use public transportation (which we like to do in big cities.)

There's an older song that often flits through my head at various times.  I can't remember the artist, but it says, "For such a time as this, I am placed upon the earth, to hear the voice of God and do His will . . . "  I have no idea why we are on this journey or why we now need to go to Boston to see a specialist.  But I DO know that Jesus loves us beyond measure, and that He makes all things work together for good (maybe not right this minute, but eventually---God's time is not our time.  His ways are not our ways, His thoughts are not our thoughts---but He LOVES us).  So whatever the purpose--whatever the plan, we continue to take another step, and another step . . .

Monday, July 14, 2014

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.