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

3 All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. 4 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. 5 For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 6 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. 7 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 Amazon.com.  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.

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 . . . . .

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."

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!