A Little Rough Patch in the Journey

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

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

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

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

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

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

Life Goes On . . . Joy in the Journey

Anna and her brother Joel at a recent family wedding

Anna is about ten days into her second year at college, after a good summer with a full-time office job and living on campus, building relationships with new friends. After last year's classes, she has a better picture of what career path she doesn't want and other areas she would like to explore and persue.  (Isn't that what the college years are all about?!).  She's sticking with the same major course of study of Human Development and Family Science but choosing a different minor.

While Anna's joints are doing well, her left eye never did settle down completely with the macular edema, even after the ocular injection at the end of spring.  We've been taking trips to the retina specialist about every 4-6 weeks all summer to keep tabs on the swelling. This past month's OCT (the picture of the back of the eyeball) showed that the swelling is a little worse than the July appointment.  We return in mid-October, and another ocular injection is an option if the swelling does not improve.

The GOOD news is that Anna continues to focus on the journey of life in general instead of the JA Journey being at the forefront.  It probably helps that we cut out the monthly Remicade infusions nearly a year ago.  (Even though that situation created more of a challenge in controlling Anna's diseases.)  Those 4-hour appointments, in addition to appointments with the rheumatologist and the eye specialist (every appointment 20 miles away through heavy traffic, which could take anywhere from 30-60 minutes) kept Anna's issues at the forefront of our minds and lives.  We've gained a lot of perspective in the last year or so. Anna was a Child Life Volunteer for her spring semester, and she saw patients and families who practically live at the children's hospital.  My husband, in his work setting, is getting to know a college student whose sister has been in the hospital for a few weeks now.  The more I listen to people, the more I realize that ALL of us have "something" that we're dealing with.  After 18+ years of this JA Journey, I hear other stories of even greater trials and hardships that people are facing and think, "With God's help, we can certainly handle this!"  Jesus is our strength when we are weak.

For now,  I'm glad that Anna is smiling and is enjoying being a young adult.  She truly is finding JOY in this leg of the journey. 

It Is Well With Our Souls--Even when God chooses to leave mountains unmoveable

"In times of trouble, may the Lord answer your cry.  May the name of the God of Jacob keep you safe from all harm.  May He send you help from His sanctuary and strengthen you from Jerusalem."  Psalm 20:1-2

The past month has seen little change in Anna's health.  In fact, to those of us who see Anna occasionally, sometimes it seems like her joints are worse (because her main issue is her knees, we notice when she walks and as she moves around).  We're at the point in our journey where this blog is not always first-hand information.  Anna is officially an adult and manages her own health and contacts her doctors on her own.  I only log into her Health Portal if she asks me to (to get my feedback on a message from her doctor, etc.). Those occasions are rare.  Last I heard from Anna in regards to her messaging her doctor, she was waiting to hear from her rheumatologist, after inquiring about steroid injections to the knee (or knees--I'm not even clear on that!)

Anna has had two eye appointments since I last gave an update.  The right eye has more inflammation (frequency of eye drops was increased); the left eye inflammation was a bit better; the swelling in the back of the eye is not worse, but no better.  Next week, if there is no change with the Macular Edema, she will most likely receive another ocular injection.

Anna is like the Energizer Bunny who keeps on going. Despite the challenges of stiffness and walking, I hear that she went for a hike the other day.  And she continues to volunteer at the medical center, as well as with a program for some refugee children in our area. She shows up for her college classes, shows up for her work study job, has a summer job lined up, and she keeps smiling.  She gently resists our suggestions for ways that might make life a little easier for her given her present circumstances, assuring us that she's doing fine!

Since I have become more of an observer than participant in Anna's health, my main role lately has been to pray fervently for Anna and her doctors and to keep the faith.  (Anna does fine with that, as well.)  This year of transitioning to an empty nest has me really seeking God on what He wants me to do next (sometimes the next minute, sometimes the next day, etc.)  Since January, I've become more intentional in saturating myself with Scripture (thanks to a friend who recommended theFelicityBee.com---a plan for "Inscribing the Word" each day---writing God's Word on our hearts.) I've also been involved in a very convicting Bible Study with some ladies, taking a hard look at our attitudes---and striving to live a life of abundant faith instead of "wildnerness living." 

At this moment, this JA Journey seems so very challenging.  We keep waiting to see if the medications prescribed for Anna (much less potent than any of the TNF inhibitors that worked so well but caused medication-induced lupus) will make a difference in her quality of life.  I can't remember when Anna's health was lower than it is right now.  

I talk so often in this blog about our Creator God (our Redeemer, our Lord) who loves us more than we can even know.  I have to tell you---if you have read most of my blog posts, you know that God puts a lot of songs in my head---especially when I wake up in the middle of the night or in the mornings.  The song that was in my head in the early morning before Anna's eye appointment last week was "Overwhelmed" by Big Daddy Weave.  As the song was running through my head, I was talking to God, praying about the upcoming appointment, and telling Him that I really wanted to be overwhelmed by Him that day.  I wanted to feel Him and have some tangible evidence of my faith.  When the Retina specialist was talking to us, I accepted the fact that we weren't going to overwhelmed with good medical news that day.  But can I tell you that in the next 24 hours, whenever I checked Facebook and saw some shared posts (like a Beth Moore video clip or some blurbs of encouragement by Anne Voskamp), or when I worked on my Bible Study homework or my "Inscribe the Word" project for this year, or when I got in the car with my favorite Christian radio station on---I WAS overwhelmed by God's presence.  Every word in those posts or on the radio or in the Scripture I was reading was penetrating my soul---all of them were pointing to the very same Scriptures (and I don't believe in coincidence), so I read them several times that day.  I was thinking later that it was almost like being blanketed with God's love that day.  And I know why God doesn't do that every moment of every day---His love and care is so overwhelming that I would be a blubbering mess of gratefulness and not be able to function. As I watched my son run a Steeplechase race on Saturday---a difficult, long, and grueling race---I was thinking that our journey can be like that, and we have God as our "coach" and Father, and a great cloud of witnesses (like the fans at a track meet) who are cheering us on and encouraging us and loving us through the grueling obstacles we face.

We still have "this hope as an anchor."  Thank you for your continued prayers and encouragement.  My Bible Study homework this past week was on "faith."  Replacing our attitude of doubt with a heart of faith.  The homework talked about the importance of surrounding ourselves with other people of growing faith who will encourage us and pray for us and speak Scripture into our lives.  Some of you do that for us.  Thank you.

And just in case you like to watch YouTube videos, here is a song which God used to speak to my heart on that day I asked Him to overwhelm me.  It was playing on the radio, and in that moment, I knew He intended it for me:

(Here are some of the lyrics before I post the link to the video)

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

Read more at http://www.songlyrics.com/mercyme/even-if-lyrics/#X66kHypjvJ5Xe2VA.99

Still in a Storm on This Journey . . . . Update

I can recall many times over the past three decades when we faced rough spots, and I've said to myself, to my husband, and to my children, "God has been so faithful in the past, and we can trust Him to be faithful in the present and in the future." Sometimes His faithfulness doesn't mean that we see a miracle.  Sometimes things get worse.  I do know that when our journey gets stormy, and I share with our support system (our friends, family, and network of families going through similar circumstances), that support system lifts up Anna (and us) to Jesus.  We continue to pray for Anna's body as the Plaquenil (at a half-dose now, because of adverse side effects) does little, if anything, to keep the inflammation at bay, not only in both eyes, but also at least one joint.  Anna's knee has been very painful these past ten days.  We also pray for Anna's doctors as they work to determine what will help Anna with the least side effects.  

Anna had an eye appointment yesterday.  My husband went with her instead of me this time (he already had a day off, and I didn't then have to interrupt my work day and make up time later).  When I got home, I saw the OCT (the picture of the back of Anna's eye), and the swelling (macular edema) is definitely back.  I didn't see Anna before or afterwards--she is so busy with college work as she gets ready for spring break.  So the realist in me has been a little sad, a little worried at times, wondering how Anna is doing (emotionally and physically), remembering how the first several months of 2014 were when the macular edema first surfaced, and stress was very real, and school work (high school at that time) suffered.

However, Anna just "Voxed" a message to me this evening.  (We use an app called "Voxer" and she and other family members and friends can record messages---sort of like verbal texting---we can send pictures and videos and text messages, as well, individually or in groups.  Our family really likes it, and we use it frequently.)  She sounded upbeat, even though she has a LOT of work tonight and tomorrow before spring break---said she wouldn't even be able to listen to any replies I may send or read the latest e-mail I sent her last night.  As she is processing all that is happening, she assured me that this recurrence of the macular edema and eye issues is different than when Humira failed in 2014.  Anna was thinking that I would probably be updating this blog soon, and she gave me some positive thoughts to share:

• In 2014, when her vision was a problem, we had no idea what was happening, and it took weeks if not months for the pediatric ophthalmologist to realize that maybe she had swelling in the back of her eye (he did not have equipment to test for that). Now we know what macular edema is.  It's no longer an "unknown."  And she trusts the retina specialist to stay on top of the issue and do what needs to be done in order to do everything possible to preserve her eyesight.
• In 2014, she was going back and forth between the pediatric ophthalmologist and the retina specialist, and juggling the two very different personalities and methods and relaying information from one to the other--that was stressful!  Before entering college, Anna pared down to one eye specialist---keeping the retina specialist who treats adult patients as well as pediatric patients, and who works at the medical center where everything they need for testing and for treatment (like ocular injections) is readily available.
• Those stressful months in 2014 led Anna to meet frequently with her awesome high school guidance counselor (God bless him!---I'm still thanking God for his compassion and wisdom), who helped her come up with coping mechanisms and practices to help manage the stress of health issues and frequent appointments and a boatload of assignments and tests.  She now knows ways to stay organized which help to keep her from being totally overwhelmed with everything.
• We don't have as many appointments to Lancaster (in 2014 we were going to Lancaster every six weeks for orthodontia and preparation for jaw reconstruction surgery in 2015).  So that's one thing off our plate.  (Now she's on a six-month appointment schedule with the Lancaster Cleft Palate Clinic and doesn't go back until June.)

I was thinking today that obviously, God's plan for this moment is not any miraculous healing.  So maybe one purpose of this storm is about changing me and my own thoughts and attitudes.  This entire journey has been a process of changing me (and I can only speak for me---not Anna). Please know that when you pray for us, you ARE helping. Even when the answer is not some fairy tale ending.  With your prayers, Anna is staying positive and sounding upbeat and she is filled with hope and excitement of her spring break plans to visit her sister and family in Tennessee in spite of knee pain and vision issues.  Your prayers for her doctors help (I've seen it in the past and trust we'll see again that they work hard to come up with creative ideas and options to help Anna).  Your prayers for us help---to keep this journey in perspective. This is not all that our life is about.  It's just a very small part.  I'm reminded often that each and every day is a gift.   

One Step Forward, Two Steps Back--Praying for Wisdom

Twenty days can bring a whole lot of change, and not all of it good.  In the last twenty days, Anna stopped taking Methotrexate (because of elevated liver enzymes).  She began taking oral Prednisone and Plaquenil. The oral Prednisone was finished after a week (thank the Lord! Anna does not like what Prednisone does to her mind).  In the middle of that medication dose, Anna's foot was feeling so much better, but as she tapered the medication, the arthritis returned.  So her rheumatologist arranged for her to have a cortisone injection into the joint this past Friday.  This was done by the radiology department at the medical center, as the joint is to tiny and the procedure needs to be precise.  Afterward, Anna wished she had her phone or a camera with her.  She was able to watch on the monitor as they completed the procedure.  She thought it fascinating to see them insert the needle into the joint. Within 12 hours, the foot was feeling good!  In the past, I described this as a toe issue, but Anna explained that it wasn't exactly the joint in the middle of the toe---it was the joint that connects the toe to the foot. Anna has grown to greatly appreciate cortisone injections! Last week Anna described walking as painful.  This week she is back to going for runs on campus.

Thirteen days into taking the newly prescribed Plaquenil, Anna sent me pictures of a rash on her cheeks.  She described some other symptoms of side effects which she was experiencing.  She contacted her rheumatologist, who suggested that Anna stop taking Plaquenil for a week to see if those symptoms would go away.  They did.

Today we had an appointment with the retina specialist, with Anna taking no systemic

medications for almost a week and just eye drops for the eyes.  We discovered that Methotrexate had been doing a great job at controlling inflammation in Anna's eyes---even without the Remicade that we had to abruptly stop in early October. We were dismayed to discover that inflammation is back in BOTH eyes (the right eye has been quiet for years), and the macular edema is recurring in the left eye.  So what do we do now?  The retina specialist put in a direct call to the rheumatologist and left a message.  They will confer with each other to come up with a plan to control this inflammation.  (Dr. N---the eye doctor is willing to use ocular injections, although the risk of cataracts increases with the frequency of those).  For the next two weeks, she is adding eye drops.  And she told Anna to call her and even have her staff page her if she is in surgery if Anna has any concerns.

The Hershey Eye Center became a prayer room/area for me today.  As soon as Anna took the visual test, I knew that it would probably not be the best appointment.  I was praying for wisdom from God for Anna's doctors.  That prayer continues.

This journey is getting rather bumpy again---almost a little out-of-control.  But I know that Jesus remains in control.  The joy of the Lord is our strength---keeps us from drowning in worry and sorrow (although I still tend to sigh a lot as I process all of these new developments).  I just sent out some cards to some people today, and the notecards have a verse on them that kept running through my mind today:  "May the God of hope fill you with all joy and peace as you trust in Him."  I'm praying that verse over myself today. Thank you for your prayers for Anna and her doctors.

 

Big Change Ahead -- Taking a Leap Into the Unknown

Ready or not---we are taking a different path on this journey.  Anna was scheduled for a Remicade infusion this afternoon, but before we headed to Hershey, her new adult rheumatologist had scheduled an appointment to talk (a little closer to home---she was in a satellite office today).  She (the adult rheumatologist--Dr. S.) is concerned about the results of some labs that Anna had done last month.  Dr. S. says that the numbers indicate that Anna is heading toward medication-induced lupus.  I have always tried to be mentally prepared before these appointments, so I had been thinking about this appointment and all of the possibilities and options available.  I was assuming that maybe we would taper the Remicade and discuss other biologic therapies.  I was not mentally ready to hear that we are stopping Remicade for Anna, and all of the other TNF-inhibitors are now "off the table," because it's not just Remicade that can cause medication-induced lupus.  It's all of the biologics.  The Remicade infusion for this afternoon was abruptly cancelled. No more monthly 4-hour appointments in Hershey.  The course for now is to continue with the Methotrexate (not increasing it, because the liver enzymes numbers have been slightly elevated lately), and continuing the frequent appointments with the eye specialist so that we know what's happening with the uveitis.

There are a multitude of thoughts and emotions that I have experienced this afternoon (I can't speak for Anna, although we talked a little bit about this as I took her back to the college).  On the one hand, I feel like cheering and maybe dancing, because she is done with those potent biologics.  That alone deserves a celebration---maybe?  On the other hand, there's a little bit of panic.  The battle over the years to control the uveitis and protect Anna's sight in her left eye has been long and tough and heart-wrenching at times. We have relied on first Humira, and then Remicade, to "keep the beast at bay."  On the one hand, I am not a doctor, and Dr. S. knows SO much more than I do.  On the other hand, I keep thinking, "Has she read Anna's medical history?  [I think she has.]  Does she know the extent of the uveitis flares we've experienced in the past?  What in the world is going to happen with Anna's eyes since we're quitting biologics 'cold turkey'?!"  I don't want Anna to have Lupus, but I also want to protect her eyesight.

If you have read most of my blog posts, you know that the Lord often speaks to me through songs.  After the appointment today, a song was playing on the radio, and that little voice in my head kept bring my attention to some of the words of Matt Redman: 

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

We are definitely taking a gigantic leap into the unknown, and it's a little frightening.  Yet we know that God has been faithful in the past and will continue to be faithful, and we never walk alone.

Shifting Gears, Transitions, and Distractions . . . .

We are truly shifting gears in this JA Journey, which we have been traveling now for 17+ years.  I've mentioned before that Anna has been taking the reins lately.  She is decisive, and one of her decisions was to say good-bye (along with a huge "thank you" and a hug) to her pediatric ophthalmologist.  We saw him two weeks ago, and she told him then that she has decided to pare down to just one eye specialist, and she has chosen the retina specialist. Makes good sense, since the retina specialist has all the instruments she needs at the medical center to do what needs to be done as issues arise with Anna's eye.  The pediatric ophthalmologist does not, as he is in private practice and has to send us to see someone at the medical center when the macular edema recurs.  Anna thought this was also the perfect time, since she has aged out of pediatric rheumatology and will be meeting her adult rheumatologist in about two weeks.

Anna has also begun to keep her own calendar of appointments.  This is especially important since she will be moving to her college campus in less than one month, and since she will be keeping better track of her class and activities schedule than I will.  It's time for me to step back (believe me, this is not easy, especially since Anna is our last child to leave home!), but I feel like I'm making progress as a mom.  (If some of you are praying about this for me, THANK YOU!!!  I can feel your prayers as the Lord is shifting my emotions and attitudes and my worry as I continue to let go.)

Does this mean the end of the this blog?  I don't think so.  I know many who continue to search for stories to see what the future may hold for their child with Juvenile Arthritis and uveitis and TMJ issues.  Since this is what I was searching for 17 years ago, I want to provide this for others who need it.  I will continue to share as Anna moves forward.   I don't yet know how we will fit college classes, doctor's appointments, Remicade infusions, etc. all together, but we won't know until we try it.  Anna has scheduled her classes so that she has three mornings free.  She worked with the Lancaster Cleft Palate Clinic to reschedule her team appointment (that's tricky---they only schedule team appointments two Tuesdays per month), so that she won't miss class.  It will help that her college is just six miles from home, so she can still get to the local appointments and not necessarily have to wait for fall break or Thanksgiving or winter break.

As for an update:  We believe that the Periocular injection (steroid into the back of the eye to treat macular edema which Anna received a month ago) is working.  Two weeks ago, Anna had just a haze of protein, but no cells of inflammation in her left eye.  "Yay!  And finally!!!"  Although her vision is not quite back to 20/20, the vision test results were much better than last month.  So we believe that the swelling in the back of the eye (the macular edema) is receding.  They decided to reduce the frequency of the Pred Forte drops, and she will see the retina specialist in about three weeks for another exam (and an OCT, which will show us a picture of the back of Anna's eye).

We did have a little distraction.  Anna always has blood taken for labs prior to her Remicade infusion.  The results showed some abnormalities, and I probably should not have researched what "smudge cells" indicate before hearing from her doctor.  (Sometimes I check the results of her labs on the Health Portal system, especially when she's had some abnormalities in the past.)  That was new, and the search results were worrisome to say the least!  (Practice for me in calming myself down!)  But her pediatric rheumatologist (he's still monitoring her until she sees the adult rheumatologist) ordered more labs, had them sent to pathology, and the results today showed that they are back to normal.  What a relief, and thank the Lord!  He thought that would be the case, since her other numbers were not way off base, but he wanted to be cautious and double check.

Periocular Injection Today

When Anna was first diagnosed with uveitis (probably over 15 years ago---the years are started to mesh together), I remember reading and researching a LOT about treatment options.  And there was a time (over 10 years ago) when her pediatric rheumatologist told me about another one of his patients who had a steroid injection straight in the eye in order to get some stubborn eye inflammation under control.  At the time, I could hardly even think about such a procedure.  I did ask her ophthalmologist about it then, but he was not a fan of the concept (the Intraocular pressures can rise to an unacceptable leven, and there is no way to go in and get the medication out). Besides that, he doesn't have the ability and necessary instruments to do such a procedure in his private practice.  

How can anyone even stand to get a needle into their eye? How could a parent even stand to be in the room while anyone did that to their child?  Well, this morning, Anna did have a steroid injection into the back of her eye, and I was in the same room.  (They didn't ask me if I wanted to be there, and what type of supportive parent would I be if I asked to be excused to the waiting room?)  While I watched the prep (which took a lot longer than the actual  injection---numbing the eye with anesthetic drops, and then a swab of anesthetic until Anna said that the eye no longer felt scratchy), I did not watch them (the doctor, who held the syringe, and the resident, who pushed the steroid into the eye) as they did the actual procedure.  I closed my eyes and prayed for their hands to be steady.

Anna knew the risks.  The ophthalmologist (Dr. M) reminded her of them at our last visit with him, when we told him of the possibility if the macular edema was still present at our appointment today with the retina specialist.  Dr. M would not have chosen this route.  But Anna truly trusts the retina specialist, and she wanted to avoid oral Prednisone, which messed with her mind two years ago, even though it calmed down the macular edema.  And this current macular edema has lasted for several weeks now.  She's ready to have better vision in her left eye again.  The retina specialist today assured Anna that if her pressure rises, we can counter that with different drops.  About halfway through the prep, she asked Anna if she was okay (Anna was), and Dr. N. told her that if really wanted, we could stop, and reschedule it to be done "upstairs" and under sedation.  (We were doing this in the clinic, without any sedation.) Anna was just ready to have it done and over with.

And the verse and song God has given us these past few days?  Psalm 3:3 (see the picture at the top of this blog post).  I was feeling the Lord being a shield around us today, giving us peace and a "let's do this attitude" instead of fear.  I am so thankful for specialists like Dr. N.  And I'm thankful that she sees adult patients as well as pediatric, so Anna can stick with her instead of "aging out" as she is doing with her pediatric rheumatologist, whom we greatly respect.

Quietly Confident . . . . . beginning a year of transition in Anna's JA Journey

The beginning of this new year of 2016 has already brought reflection as well as looking to the future.  We've been on this journey a LONG time (diagnosed in 1999 when Anna was not quite two years old)!  The uveitis has been the most stubborn; the joints have usually responded well to steroid injections.  The TMJ involvement (discovered several years ago) was an unwelcome surprise, and the recent jaw reconstruction surgery was a major event for Anna and our family.  After a few weeks of treatment for the recent flare of uveitis, her left eye is once again clear, and although Anna was concerned that some small changes in her vision signaled a recurrence of macular edema, an OCT (Optical Coherence Tomography, or imaging of the retina) showed that the back portion of her eye looks normal.  (Praise the Lord!) Overall, Anna is doing well.  (I hope that is good and hopeful news to JA parents who are trying to get a glimpse of what the future may hold for your children---I know that some children with Juvenile Arthritis have more pain and problems than Anna does, and others have had less issues.)

We have an end in sight for the braces---Anna is scheduled to get them off the first week of May.  Now that's exciting!  Just before prom and graduation!

Anna is a senior in high school, already taking college courses through the dual-enrollment program, and she is eager to enroll at Messiah College as a freshman this fall. Her current plan is to study Human Development and Family Studies, with a goal of becoming a Child Life Specialist at a Children's Hospital.  (This JA Journey has been significant in Anna's developing interest and passion for this field of study.)

Graduating from high school and moving into "adulthood" does not mean that Anna gets to "graduate" from Juvenile Arthritis and uveitis.  It does mean, however, that sometime in the summer, she will "graduate" from the pediatric rheumatology department where she has been seen (by the same doctor) since she was a toddler.  There is definitely sadness with this transition, but the positive side of this is that because her rheumatologist knows Anna so well, he has a good idea of the right fit for an adult rheumatologist.  He has a particular adult rheumatologist in mind for Anna.  We've learned to trust his judgment about so much--we're going to trust him with this, as well.

A friend of mine was telling me about a video she recently saw.  I watched it this evening, and thought that this is GOOD---going from fear to quiet confidence.  This video was talking about a job situation, but I also think it can be a description for all aspects of life. When we first started on this JA journey, there was so much uncertainly and fear.  (Sometimes, unexpected flares can be rather frightening, as well as changing medications, and new biologics, etc.) But watch this video (only 6 minutes!)---what if we aren't afraid?  What if this journey has been designed specifically for us by God?  He has walked beside us all along. He continues to walk with us.  We can approach the future (with the changes that are coming) with confidence.

Smiles, Joy, Hope . . . . . and shifting focus for now.

After nearly two years of uveitis, macular edema, and jaw reconstruction surgery overwhelming our thoughts and our lives, we are finally on a even keel and peaceful section of this JA journey. Since I last posted, Anna has had a Remicade appointment, a visit to the Lancaster Cleft Palate Clinic to adjust some brackets and wires, and a visit to her ophthalmologist.  That was a great visit!  Both eyes were still clear, so we took a step by eliminating the Pred Forte drops.  First time to be totally off Pred Forte drops since January 2014.  Now that is worth celebrating!!! (After almost a year of seeing the ophthalmologist and his office staff every 2-6 weeks, we now don't have to go back for awhile---I cheerfully told them, "Happy Thanksgiving, Merry Christmas, and Happy New Year!  We'll see you later!")

So how does Anna keep busy when she doesn't have many medical appointments to fill her time? Besides her high school classes, attending football and now basketball games to participate in the student cheering section, she has been working diligently at a particular piece of music for District Band auditions last Saturday.  Some of you know that this was actually a concern for me.  Anna had a 2-month hiatus from playing her instrument in August and September--and into October. When she picked up the bassoon again after her jaw reconstruction, she had to get used to her teeth feeling different.  They were now in a different position, so she had to find a new and comfortable position for them as she plays her bassoon.  When she would practice long and diligently, she could feel her jaw swelling.  One evening, after playing for well over an hour, she said she could feel a lot of pressure in her jaw.  (Another night, she began putting her instrument away after ten minutes of playing, because her jaw was already beginning to swell.)  I was continually recommending ibuprofen.  But the great news is that she successfully made it through auditions!  She will have about six weeks in January and February that will be intensive in learning music and playing her bassoon for District Orchestra, District Band, and for County Band.  I know some of you pray for Anna a lot (Thank you!).  If you think of her after the new year, you can pray for her about these musical festivals and the well being of her jaws and her stamina.  Just one full day of auditions wiped her out physically.  As I look at the schedules for these festivals she will be participating in, I can see that she will be very busy, and I know already that she will be exhausted once these two-day events are over.  But we know that God promises to go before her, and He will give her strength as she needs it.  (Since beginning Remicade, there are times when she will go to bed early and sleep for 12 hours straight if she doesn't have to get up for anything like school or church.)  She will just need a day or two of sleep once she returns home.

Despite these little concerns I have about the music festivals, I am SO very glad that she once again has these opportunities--especially during her senior year of high school.  And two of the three festivals will be over before her college class begins, so that will greatly help.

For now, we are focusing on preparing our hearts and our home for the Christmas season. We love this time of celebrating the birth of Jesus with family and friends---knowing that because of Him, we can truly have hope and joy along this journey of life---through the good times and in the tough times, as well.  We have experienced His love and His peace (more each year, as He shows us His mercy and grace continually), and as I say in this year's Christmas card, it is our joy to worship and celebrate Him daily, but even more so during this season.

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.

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!

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

"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.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We Have a Plan . . . .

As of today, we have a plan.  And we have a little breathing room.  At Anna's appointment with the ophthalmologist this past Thursday, the inflammation was better.  A 2+ instead of the 4+ inflammation a week prior.  (ANY inflammation is not good, but a 2+ actually sounds good after a 4+!)  Anna's pediatric rheumatologist has researched the latest information available to decide between Remicade and Orencia.  The plan is to start Anna on Remicade.  Then, once her eyes are quiet, he will switch her to Orencia.  This will happen soon, but we still have some things to do, like wait for the insurance company to approve the Remicade, get a TB test for Anna (that will happen this week), and settle on a time frame for the infusion.  Anna didn't realize until tonight that this means she will no longer be taking Humira.  She seemed pleased with that.  She's glad that she can give herself injections, but it's not her favorite thing to do.

I choose to share Anna's story here, because for so many years, I have wanted other parents to know that Juvenile Arthritis does not HAVE to overtake your life.  (Things I wanted to read when Anna was first diagnosed and I wanted to have a glimpse of what life might be like in the future.)  I do have to concede that for the past few months, this disease (more the uveitis than the arthritis in the joints) has interfered with our lives a little more than we would like, although not nearly as much as some families experience.  I do believe, though, that this is just a season of life.  Although we cannot choose our circumstances, we can choose our response.  So we continue to choose to pray for those who make decisions for Anna's care, for wisdom and clear direction.  We choose to find all the things we can be thankful for, and we've seen and felt so many answers to little and big prayers.  We choose to laugh and set goals for the future.  This may be a sizeable bump in the journey, but the journey is not done yet!  Stay tuned . . . .