Monday, December 14, 2015

The Unexpected Road . . . . .

We are on the rollercoaster again with this JA Journey.  We were so happy to take the Pred Forte eye drops "off the table" for Anna before Thanksgiving--about 3-4 weeks ago.  Anna has had clear eyes for several months now, and we were so hopeful that this good news would last for a long time.  I do remember that she had clear eyes without drops for almost two years before Humira stopped working for her (in early 2014), and I was hoping that we could get to that point again.

Even though Anna's uveitis is usually asymptomatic, over the weekend, I noticed that Anna's left eye was really bloodshot.  When I asked her about it (and started to think of everything that could cause this problem), Anna was telling me that her vision in that eye was different.  We contacted the ophthalmologist early Monday morning and were thankful that they had some cancellations in their schedule and could squeeze in an appointment for Anna.  The verdict:  2+ inflammation---in just 3-4 weeks without the Pred Forte eye drops (and no missed doses of Methotrexate or Remicade).  Anna is back on the steroid eye drops, 4x daily for at least the next week, and he will see us again on Tuesday.

I feel like Sunday was the worst day---knowing something wasn't quite right, but needing to wait another day to call the doctor.  Now we know the problem, and we have a plan.  That's a positive.

We still have so much to be thankful for.  A bloodshot eye that made me ask Anna some questions.  Cancellations at the doctor's office that made some space for Anna to be seen early this morning, so we didn't have to spend more hours wondering and worrying.  I once heard someone challenge us to ask God to reveal Himself to us, because that's what He's all about---He really wants us to know Him---how much He loves and cares about us.  In the middle of unexpected difficulties, we can still find some positives--we see evidence of Him working.  He helps us work through the worry to come to a point of peace and calm.

We always appreciate your prayers for Anna!

Tuesday, December 08, 2015

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.

Sunday, October 25, 2015

Moving Right Along, and Some Realities of Remicade

Anna and her brother, Joel

Anna continues to make post-surgery progress.  She tried eating some Chex Mix last week, and decided that she is now ready to eat chips and snacks again.  Today she asked if we could eat at Texas Roadhouse---her first attempt at eating steak since her surgery.  She can do it, as long as she cuts it into tiny pieces and takes her time.  That's the key to eating for her (and I believe we as a family have all slowed down our eating a bit, so that Anna is not left eating alone at the end of a meal---and that's a good habit).  I remember about two months ago, the orthodontist told Anna that by October, she would feel almost normal again, and be able to eat almost all of her normal foods.  He was right!  Patience and perseverance.  That's what it took.

The only medical-related appointment for Anna over the past few weeks was her Remicade infusion on Friday afternoon.  We had scheduled it so that Anna could participate in a field trip to the Carlisle Army War College that day.  She had a great time and had much to tell me and show me (from pictures from her phone) and exclaim about when I picked her up. It was a beautiful day on Friday for a field trip, and the students were outside all day in the wind, touring and walking and visiting the interesting outdoor, interactive museum on the grounds.  On the 20-mile drive to Hershey for her Remicade treatment, she became increasingly subdued, prompting me to ask her several times if she was doing okay.  She was just tired and wiped out.  And then a few hours of Remicade dripping into her body increased her tiredness.  Once we arrived home at 8:30 p.m., she went straight to bed and slept for 12 hours.

This is the reality of Remicade for Anna.  Whenever she has a long day (even though it may be filled with fun and interesting moments), her body needs adequate time to recover---usually a "day for a day" as I've noticed. We take the bad with the good.  The Remicade infusions allow Anna to have the vision to fully enjoy field trips and other pleasures.  So I'm thankful for Remicade to some degree.  I get concerned as a mom when she is abnormally quiet and subdued.  But I'm learning to accept that and know that "this, too, shall pass---with adequate rest." I'm a realist.

We want to thank everyone who prays for Anna and for us.  We know that there are times when the Lord is carrying us through the challenging times and giving us peace and sometimes working to adjust our attitudes.  We have so much to be grateful for---like the fact that Remicade even exists and is helping to control Anna's uveitis.  And for the insurance that covers the cost of the Remicade (I was astonished when I saw a recent insurance statement which had the cost listed, and it humbled me to know that this cost has been covered by Anna's two insurances---I know I cannot take that for granted.)

Sunday, October 11, 2015

More Good Appointments

We had a very busy week with a trip to Lancaster (follow-up on the surgery and orthodontics) and a trip to Hershey, to the retina specialist (besides school for Anna, work for me, a football game for Anna, and her last high school homecoming dance). The orthodontist at the Lancaster Cleft Palate Clinic continues to be very pleased with the healing process from the reconstruction surgery.  The retina specialist gave us very good
news that Anna's eyes remain clear of inflammation. Because Anna has been back on her medication regimen for just six weeks, the retina specialist does not want to rush to make any changes. We'll continue with one Pred Forte eye drop daily and Prolensa eye drops twice daily, plus the weekly Methotrexate and then Remicade every four weeks. When Anna sees the ophthalmologist in early November, we may be able to stop the Pred Forte eye drop at that point.  The first priority is to get her off the steroid drop.

I sometimes think back to 2014, when Anna's uveitis flared so badly because she failed Humira after five years. (It was this time last year that we flew up to Boston to have a consultation appointment with Dr. Foster regarding Anna's prolonged eye inflammation and resulting macular edema.)  It's very likely that Anna's system built up antibodies against Humira at the end of 2013, and there's no guarantee that this will not happen with other biologics over time; in fact, it is likely. However, we will take things as they come and be thankful today that her eyes and joints are quiet and that she continues to heal from surgery.  She did find out that her face is still rather tender when she went to rub foundation onto her skin in preparation for homecoming (she doesn't usually wear much makeup). She still has one area of numbness, but most of the rest of the numbness has subsided.  She tried biting into a Pita cracker recently, but she found that to be difficult, and decided that crackers will need to wait.  She WAS able to bite into a soft meatball sub this week, and she attempted to eat chips.  That took a while, but she did it!  Anna has also been making progress with her bassoon.  She returned to her private lessons this past week, and for now, she practices for shorter periods of time to build up her strength and stamina.

Even though the reconstruction surgery was a major circumstance in our lives this year, it feels like we're on the downhill trek of a very tall mountain.  But life is full of mountains and valleys---of hard times and circumstances and easier times when we can relax and take a breath. For now, we are appreciating some time to breathe a little easier, to enjoy the time when we are not needing to process so much new medical information and weighing the opinions of different specialists.  A time to enjoy some of the normal things of life---like autumn breezes and homecoming football games and times around a fire pit with friends.

I've been working on knowing God's Word better, and even though my brain is older and memorizing is more difficult than it used to be, I've been working on that, too, as various verses and passages speak to my heart.  Over the past few months, I've been working on memorizing one passage in particular.  This is encouragement for all aspects of life, whether it's a chronic condition, or other difficult times (we all deal with hardship and messes in life!)  Whatever your circumstances, remember this:

"Be on guard.
Stand firm in the faith.
Be courageous.
Be strong.
And do everything with love."
1 Corinthians 16:13-14

Sunday, September 27, 2015

A Reflection, Recommended Reading, and a Brief Update

There are some days when I realize how long we've been on this journey that we've been called to travel.  Anna was diagnosed with Juvenile Arthritis just before her second birthday. This past week, she celebrated her 18th birthday. Obviously, this road does not end on any certain birthday. So we continue.

In the very early days (back in 1999), I came across the following verses from the Bible, and at the time--in that moment--it seemed like a direct message just to me (from 2 Corinthians 1, from the New Living Translation):

God Offers Comfort to All

All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ. Even when we are weighed down with troubles, it is for your comfort and salvation! For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. We are confident that as you share in our sufferings, you will also share in the comfort God gives us.

When I read that in 1999, I was definitely feeling mired in our "troubles," (the shock of having a child diagnosed with a chronic disease that will not be fixed with ten days of medication) and these verses were (and still are) a huge comfort to me. We've grown and matured since then, and while the road is not always easy, Jesus gives us strength and peace when we have none to offer in and of ourselves.  He holds us up when we feel rather weak.  We have always prayed that in all that we go through, in everything we do, that we will see who God is.  And we have.  Our prayer has also been that others will be able to know the love and presence and comfort of God through our circumstances, as well.

I am humbled when our experiences have been able to help other moms (and dads, too!). There are newly diagnosed JA children all the time, and parents who at first are in shock, who feel alone, who are overwhelmed by trying to understand this diagnosis and its implications, who are wondering what the future holds for their child.  They get a lot of information from great pediatric rheumatologists and their nurses, but sometimes they just need to hear stories from other parents who have been where they are.  We can help with basic information, comfort, encouragement, and hope that the future does not need to be bleak.  We have groups on Facebook, where information and encouragement and support is shared.  There are family-oriented conferences and activities offered by the Arthritis Foundation and some other groups.

And for those parents who are wanting to read everything they can, I do have some recommended reading---books which have been great sources for me.  One book which explains a whole lot about muscle, bone, and joint pain; rheumatic diseases, and the latest treatments as of 2004, when the book was written by Thomas J. A. Lehman, MD.  (Believe me, a lot has changed in treatment in the last 11 years, but this book is still excellent, and written to the audience of parents---in language we understand!)  I just saw on-line that Dr. Lehman has another book available, "A Parent's Guide to Rheumatic Disease in Children."  I just ordered that one from  This is a newer book, published in 2008.

A book that doesn't speak to rheumatic diseases, but to discussing why God doesn't always choose to immediately fix all of our problems and troubles is by Laura Story:  "When God Doesn't Fix It."  This book just came out a few weeks ago, and I ordered it and read it last weekend.  As I was reading, in my head, I kept saying, "Yes! Yes! and Amen!"  So much truth and love in this book.  It is one of those books where you want to quote a multitude of her sentences to your friends and family!  So much so that I am just recommending that everyone read the book for themselves.  Laura Story is a singer/songwriter, and I also recommend her music---so much of what she has learned and heard from God is written into her songs, and this love and truth just sinks into my soul as I listen (usually when I'm working in my kitchen---that's when I usually put music on.)

To all JA parents and families---let's continue on this journey with hope, with a sense of calling, with the truth of God's love and comfort throughout the entire road, but especially in the rough patches along the way.  We can have a good cry every now and then (sometimes I just need some "moments" or "a day" to deal with some of the rough detours before I'm ready to get up and move forward), but we have something to offer to each other:  encouragement, advice, support.

Oh---and an update on Anna!  She's beginning to regain some feeling in her lips and gums and face, although she still has some areas that are numb.  (This is to be expected.)  She still needs to be careful with what she eats---still can't bite into a lot of things.  She was hungry for a good hamburger today, but ordered a hamburger steak, since she knew she would have to cut it up in little pieces and eat it with a fork. Anna just had a Remicade infusion a few days ago, and they took blood work, and this time, her doctor asked for some more specific numbers to check on her iron levels.  Although her hemoglobin, hematocrit, and red blood cell count were all just a little low, they were not far from the normal range.  That is good news, since there have been some days when she has seemed rather pale and tired.  We'll continue with the iron supplements for now.

Friday, September 18, 2015

Getting Her Smile Back . . . .

Photo courtesy of Joel Zeigler, Anna's brother
It's been eight days since Anna has been able to eat more than a liquid diet.  She's still very thin, and is taking daily iron supplements to get ahead of the lower count of her red blood cells (she'll get more labs done next Friday, to see where those numbers are).  She's becoming more accustomed to removing and replacing her current elastics whenever she eats.  She's adjusting to the fact (and the feel) that her teeth actually meet when she closes her mouth (all around).  Although she's not yet eating crunchy food or food that you need to really bite into, she's appreciating bread and soft cookies and some other foods that she really missed.  AND . . . . she picked up her bassoon this week for the first time in over five weeks.  A band concert is coming up in November.  Auditions for District Band will take place in early December.

As we expected, life (including playing the bassoon) does not instantly go "back to normal" following jaw surgery.  Both the upper and lower jaw were each moved---the lower jaw was advanced by 8 mm.  The upper jaw was moved up (I think by 3 mm---I don't have the paper in front of me), and advanced by several mm.  (I think about 5 mm).  So that means that the inside of Anna's mouth is different than it was six weeks ago.  And that means that she now has to learn a new way of positioning her lips and her mouth when she plays her instrument.  She will get there---the first time was a challenge, and she said had some swelling after her Symphonic Band class yesterday, and her teeth and mouth really hurt. She really does want to finish strong this year with her bassoon.

Despite the challenges, Anna is enjoying her senior year! She visited the cross country team at one of their home meets. She was on the team for two years---Remicade infusions wipe her out---there's no way she would be able to get through the two weeks of pre-season intensive training and then the six-week season of racing.  She's enjoying being a part of the student section at football games and soccer games.

I'm thinking about doing a post on highly recommended books.  I may do that next week.  I'm in the middle of reading an excellent book---not about Juvenile Arthritis, but about hardships in life.  I hope to finish it tonight.  So many truths in this book, and a perspective that so many of us can learn from and appreciate!  Stay tuned . . . . .

Thursday, September 10, 2015

More Steps Forward . . .

In the past ten days, along with a school schedule, a college course, visiting with family, a holiday, etc., we've also fit in two trips to Lancaster and two trips to Hershey for appointments.  Whew!  It's been a bit hectic with a lot of travel time (and time off work for me and school for Anna), but it's been good, as well.  As of last Friday (not quite four weeks from surgery, at that point), Anna lost seven pounds---and that's with drinking milkshakes at least every other day, plus finding other foods to puree into liquid.  Most of her swelling has receded, although she occasionally has some that comes and goes---I've been told that it's quite normal after surgery.

One appointment was with the ophthalmologist---the first check of Anna's eyes since before her surgery.  We are so thankful and relieved that both eyes are clear of inflammation, and that is with a brief hiatus (before and after surgery) from her systemic medications.  Her pressures were good, too!  We are decreasing the frequency of the Pred Forte eye drops, and if the inflammation does not recur in a few weeks, we will try to stop that drop altogether.  After that . . . . well, let's just say that there are plans and possibilities after that, but I've learned over the years that sometimes it's best not to look too far into the future, but take one appointment at a time.  (Yet, it's fun and hopeful to think of decreasing meds in the future!)

Today, Anna had the heavy bands removed.  The removal (and subsequent freedom for her jaw) has meant a bit of pressure, but little pain.  She does need to use elastics in a different part of her mouth, but these are thinner and allow for movement, and she can take them out when she's eating.  Which means the liquid diet is officially over!  We stopped at Panera Bread on the way home, and Anna ate some chicken noodle soup (with chicken & veggies for the first time in weeks!) and a dinner roll, and a soft chocolate chip muffin!  Tonight for supper she had spaghetti and soft brownies. This is a huge step for her, after being on a liquid diet for over four weeks!  (She often commented these past few weeks that she would never take eating for granted again.)

She still cannot open her jaw really wide.  That will come in time.  Her lips and teeth and gums are still numb, and so it's a learning process to be able to chew again (a different experience when you can't feel some parts that used to have feeling).  It is most likely that feeling WILL return in her teeth, lips, and gums---it will just take time.  She still has quite a lot of metal in her mouth.  But we will return to Lancaster in three weeks, and they will take out all the wires with the hooks needed for surgery, and put different wires in.

Our time at the Lancaster Cleft Palate Clinic was different today.  The orthodontist is out for three weeks, so they only have select patients coming in (rather than a roomful).  The orthodontist left specific instructions for the patients who are coming in during his absence (so the assistants knew exactly what needed to be done for Anna this morning).  It was unusually quiet in the office, but provided a chance for some conversation with the assistant---with her sharing a little bit about how she came to be there, and talking about how the Lancaster Cleft Palate Clinic being in existence by miracles, really.  (This exchange was one of those God-moment conversations---for those of you have also experienced conversations where the Lord is speaking directly to you through other people, and at least one of you is aware of the significance of the words being said.)  The Lancaster Cleft Palate Clinic is a non-profit organization, providing hope for so many children and youth who have major jaw and teeth issues, all the while existing on donations and what insurances pay them and on a little bit of state funding and fundraising.  As she shared some specifics, I was reminded of how God works---and He has truly been instrumental in providing people and equipment, etc. to this wonderful organization that does so much good.

As we travel this journey (and some of the other journeys in the life of our family), I am constantly praying, asking not only for guidance, direction, and peace, but also for God to reveal Himself---to see glimpses of His presence as we walk along. (He WANTS us to see and know and experience Him and His love for us.)  I've experienced this a lot in my life, and I continually want to know that He is present and that we are following Him.  In this very brief conversation with the LCPC assistant (probably less than five minutes), I did see a glimpse of His presence today---and affirmation that He has been working to provide for the Lancaster Cleft Palate Clinic, not only for Anna, but for all of those other patients who need them.  I try to adhere to Henry Blackaby's advice:  "Find out where God is working, and join Him in that work."  Well, I  am not at a point where I can join the LCPC in their work (I don't have funds to donate, and I'm not looking for a new job), but Jesus seemed to be smiling down today and saying, "I am definitely at work with this place.  I am here."

Tuesday, September 01, 2015

Clarity on Things Past and Things to Come

Anna at LCPC, reading a book, waiting for the surgeon to arrive
So today was Anna's eagerly anticipated appointment at the Lancaster Cleft Palate Clinic with the team.  (It is awesome to have two specialists present at the same time!  In a perfect world, we would have all of her specialists together at every appointment, but I know that's unrealistic.)  We listened a lot today.  We didn't even have to ask the surgeon what made Anna's lower jaw so difficult, because he was explaining that to the orthodontist in response to a question.  Evidently, Anna wins the prize for the most times he had to re-position that lower jaw during surgery.  The surgeon still has a rather serious face and tone when he talks about that part of Anna's surgery.  We also found out that even though the surgeon had planned for and prepared for cutting the upper jaw (maybe palate is a better term for that) into two pieces before re-positioning, he didn't need to do that.

Both the orthodontist and the surgeon are very pleased with the results of the surgery so far.  The orthodontist and his assistant both commented on how good Anna looked today. When the surgeon arrived, the orthodontist told him, "Looks like you hit a 'home run' with this one!"

The biggest question of the day:  Would the bands come off today?  After much discussion, the answer is 'no.'  While she is healing well and looking good, Dr. M. (the surgeon) feels like we have way too much invested in this (especially with all of the difficulties and the time he spent in the OR with her) to take a chance in taking the bands off.  It's been just three weeks since the surgery.  So we made an appointment for September 10th.  That's the day.  Anna can do this!  While she was a bit disappointed, she has rallied with a great attitude and plans to come up with interesting and nutritious food in liquid form to consume until September 10th.  The orthodontist reassured her that by October, she should feel almost normal, be able to eat almost anything, and have a good range of motion (get back to playing the bassoon), etc.  October isn't that far away.  We can do this!

Saturday, August 29, 2015

Patience in the Journey . . . . .Moving Forward

Anna was more than ready to go back to school on the first day (this past Monday).  She seems to have adjusted well to interacting with her friends and other people with her mouth banded shut. She began taking Methotrexate again last Sunday, and she had her first post-surgery Remicade infusion this past Friday.  One little hitch in the journey has been her labwork, showing some slight abnormalities.  Although it's not at a point where it's a major concern, we have been brainstorming this morning on how to add more iron to Anna's food intake.  Her doctor's suggestion has been to use iron-fortified baby cereal, and we may, indeed try that.  For today, she started adding spinach into some of the foods she purees together.  Anna's thought is, "Let's wait until Tuesday" before we go out and purchase more iron-rich foods.  (We do have some of those "green" juices at home, which she began drinking today.)  Tuesday is the day we head back to the Lancaster Cleft Palate Clinic, where we will get an idea of when the bands can come off.

In the meantime, Anna has been longing for some foods.  She asked for goulash the other night.  She pureed (and then strained) her share, but when I put the dish on the table for the rest of us, she sighed and said, "Oh, that looks SO good."  She's been enjoying milkshakes and ice cream and frozen yogurt, but tonight she was hungry for brownies. We got creative---knowing we had to cook the batter a little bit, because of the eggs.  So she baked the brownies for 10 minutes, then put some of it in the juicer and added milk and an Atkins liquid protein drink until it was liquefied enough to drink.  She was more than satisfied with the end result!

She began making a list on her little white board of foods that she really misses eating: chocolate chip cookies, muffins, bread, pasta, salad, brownies, pop tarts, real mashed potatoes (instead of liquefying them with more milk), a Subway meatball sub, and licking peanut butter and ice cream off the spoon!  She can't lick envelopes, either, since her tongue is trapped behind her teeth---she got her brother to help lick the envelopes of the thank you notes she was writing.

This, too, shall pass.  It's only for a little while.  We continue to be surrounded and uplifted by the prayers of so many.  Each day brings progress.  The Lord continues to go before us, guiding us, directing us, and helping us to stay positive and not wallow, and to inspire us (especially Anna) with creativity despite her current limitations.

Tuesday, August 18, 2015

The Value of the Bands (Post-Surgery Update)

Another title could have been a quote from Anna today:  "It all works out in the end.  It always does."  This after a follow-up visit to the Lancaster Cleft Palate Clinic this morning.  We ended up being there a lot longer than we thought we would be.  Last week Anna was discouraged about her teeth being banded shut, making eating a real challenge.  She was wishing she could have the bands off.  Today, she discovered the value of the bands that hold everything in place for now.

Somehow, someway, Anna's teeth had shifted.  Could have been during those first twelve hours or so after surgery, which weren't pretty or fun.  (If you are anticipating jaw surgery, you can message me or something if you really want more details.  I won't go into it here.)  That night, Anna said she felt like the bands had stretched and things had shifted.  The nurse attending to Anna did call the residents down, and they assured Anna that the bands were meant to have some "give" to them.  (She had a lot of surgical tape on at the time--I'm not really sure how well any of us really saw Anna's teeth with the restrictions of the tape.) Bottom line is that for the past week, Anna's teeth have been bound in such a way that the lower teeth were not centered, and they were protruding slightly in front of the upper teeth.  I wasn't sure that was right, but figured that the orthodontist would never let Anna's teeth like that and would fix the issue before we are totally done.

Herein lies the true value (what a blessing!) of working with a team of doctors which includes an orthodontist, and they schedule appointments at the Clinic and have members of the team there.

The orthodontist's assistant was the first to really take a good look at Anna's teeth.  She didn't say much, but asked some questions, and went out to talk to the doctors.  After much consultation, she came back and told Anna that she had been told to take Anna's bands off.   She said that she had never removed anyone's bands this early, but the doctors were adamant that Anna could not continue to heal from surgery with her teeth in this position.  As she gently and carefully began removing the bands, Anna was in no way prepared for the waves of extreme pain that she experienced as her teeth were loosened from their restrictions.  The bands were left off while the doctors attended to her (so very compassionate---but we were scrambling for any kind of pain relief at that point.  I had not thought to bring any--wasn't expecting to need any!--, and the office only had liquid Tyenlol for infants---we resorted to using some of that) and then they rebanded her teeth in the correct position.  That brought relief.  We stayed a little, so that the doctors were certain that Anna was okay.  They will see her again in two weeks, and decide then how much longer she needs to keep the bands on.

So even though Anna is not fond of a liquid diet, those restrictions are preferable to the pain she experienced.  (I was thinking that this is a good metaphor for life---how many of us think we want to live without any restrictions at all, not realizing that some of those restrictions are for our good?  That the mess and the pain are extreme?)

I am amazed at the difference that today's adjustments made to Anna's face on the outside.  There is still more swelling to recede, but we can really see some of the differences that this surgery has made.  Thank you for your continued prayers.  Each day has some ups and downs.

Friday, August 14, 2015

The Road Back to "Normal"

The second half of Anna's surgery was rough, according to the surgeon.  The surgery itself lasted longer than he anticipated.  He came in to see Anna several times in her hospital room, and each time, he said, "That lower jaw was tough, Anna."  The first night in the hospital was not pretty or easy.  (The nurse called the Plastic Surgery residents down to Anna's room, because she wanted some advice and clarification on when we resort to cutting the bands off.  They prescribed anti-nausea meds into the IV, and that seemed to help.  The nurse had to call some of the other nurses to help with her other patients, because Anna needed her attention for awhile.)  But we've made it through.  Her surgeon also told her, "It only gets better from here."  And it has gotten better.  The swelling has been receding slowly.  Some bruising is beginning to appear, but we expected that. 

The independent Anna we know and love is beginning to emerge again.  We watched some YouTube videos this morning from a woman who had similar surgery in 2011 (look for Sasha Maggio on YouTube).  She has posted an entire series.  We didn't watch all of them yet.  Anna has also been researching recipes for liquid diets (Boost and Ensure are rather expensive, and those baby food pouches can be, as well!).  I am decent at researching the internet, but I think Anna is even better at it.  (that younger generation!).  She's already planning some of her meals for the next few days.  We're trying to get nutrients and calories into her. 

For the past few days, Anna has had a very short list of who is allowed to see her.  (If you are close to our family, call me or message me if you want to visit and want to see if you are on the short list!)  She's thinking that beginning tomorrow, she'll be ready to see more people, and is eagerly anticipating a visit from some beloved cousins.  School begins in ten days, and she already is making plans to start seeing some school people and her guidance counselor before the first day.

We  have been truly grateful for the wonderful support system we have.  With family, church family, and many, many friends who have shown us love and support and are praying for us continually.  We have seen the truth of James 5:16b (NLT), which says, "The earnest prayer of a righteous person has great power and produces wonderful results."  We have seen these wonderful results during Anna's hospital stay and her healing process.  God never promised us that this life would be easy.  He promised, however, that He will walk with us each step of the way.  We are learning endurance and keeping our eyes on the goal, instead of the difficulty of the challenges.

Sunday, August 09, 2015

Surgery Tomorrow

Penn State Hershey Medical Center Children's Hospital

Everything is in place (insurance, doctors, schedules, eyes are currently clear of inflammation, etc.)  We'll report to "Admissions" at the Hershey Medical Center early tomorrow morning for Anna's jaw reconstruction surgery.   Friends and family have been so thoughtful and kind and caring as we've prepared mentally, spiritually, and physically.  We're spending the evening chillin' out a little.  Thanks for your prayers for Anna and for us.  (I've been reminded as we've met with various doctors that she has some of nicest, kindest medical people caring for her.  For that I am so very thankful.)

Sunday, July 19, 2015

Blessings in the Unscheduled Stops in the Journey

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

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

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

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

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

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

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

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

Monday, June 15, 2015

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

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

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

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

Thursday, June 04, 2015

What a Difference a Week Makes . . . . .

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

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

Thank you again for your prayers.

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



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

Thursday, May 28, 2015

A Tough and Miserable Day

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

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

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

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

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

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

Sunday, May 24, 2015

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

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

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

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

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

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

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

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

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

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

Friday, March 27, 2015

I Surrender All . . . . . . . .

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

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

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

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

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

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

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

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


Tuesday, January 27, 2015

Unexpected GREAT News!

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

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

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

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

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

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

Friday, January 23, 2015

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

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

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

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

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

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

"Already There"

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

Oh, oh

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

Oh, oh, oh, oh

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

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

Sunday, January 11, 2015

Realities of the Journey . . . . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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