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.)