Trying Something Different this Summer . . . . .

MRI results are in, with no major differences from the MRI last fall.  Anna will have another MRI in six months to monitor the TMJs.  So thankful that there's no more damage that the radiologists have seen!  Since Anna rarely complains of pain, but did mention some stiffness in her jaw at the last appointment with the rheumatologist, we are going to go ahead with another procedure over the summer, since further cortisone injections to the TMJs are not advisable:  Dexamethoasone Iontophoresis.  I haven't had time to thoroughly read over the material Anna's doctor sent to me on the procedure, so I won't even attempt to explain any of it here.  We do need to find a local physical therapy place to have this done (if we aren't successful finding a local one, we can always go to Hershey Med, but local would be more convenient).  But I asked, and it's okay to wait until after July 1st to move forward with this.  Our insurance provider is changing as of July 1st, and Anna's schedule is fairly full until July 1st, besides.  I will ask around and check out some local PT facilities in the meantime.  (Changing insurance carriers mid-stream can be a pain sometimes!  Been there, done that!)

I'm not feeling eloquent or full of thoughts that need to be written down tonight, but I did want to post an update!  Anna continues to live a relatively normal and busy life and never complains of pain---just shrugs off a little stiffness after a 70-mile car ride every now and then, but insists that she doesn't feel any pain even when she's a little stiff.  She is doing well at giving herself the Humira injections.  We go back to see her ophthalmologist in 10 days, and we'll pray that her eyes remain clear. 

I continue to constantly pray for wisdom and guidance (for me, for Anna's doctors, etc.), and am so thankful for the little and big ways in which I see some "God moments."  

An Update . . . TMJ Issues Continue . . . .

Anna had an appointment with the pediatric rheumatologist a few weeks ago.  He asked her some questions about her jaw function, and her responses were enough to raise some concerns.  So Anna had another MRI this past Friday.  We should know the results within a week or so---to know if she has more active arthritis or more damage there.  Over the past five years or so, she's had three bilateral injections to her TMJs.  According to the research and the data her doctor has been collecting with help from his medical students, any more cortisone injections will probably not help.  But he has some other options available should we need them.   

So many thoughts going through my head!  Sometimes I'm a little uncomfortable with the fact that Anna is one of those pediatric rheumatology patients that doesn't have many tried and true options left (if I allow myself to think about it too much).  But then I've been reminded time and time again that God is sovereign and His timing is perfect.  Each of us is born "for such a time as this"---for a specific purpose.  God already knows Anna's future, and I can trust Him with it.  He walks with us through every single step of this journey.  We have SO MUCH to be thankful for---for doctors, nurses (and their wisdom and intelligence), for friends and family who are so aware and supportive (even though we ALL have issues of varying degrees), for the medical advances that just keep coming.  Plus the fact that in the whole scheme of things, Anna is not always a typical JA teenager---she rarely complains of pain (I think her pain tolerance is incredibly high), and she lives a relatively normal life.  So we focus on the positive and keep moving forward step-by-step, and we continue to ensure that this Juvenile Arthritis journey we are on is only a very small part of our lives, and not an all-consuming, overwhelming interference!  Our Creator God is so much bigger than all of this.  We can trust Him.

  I'll update again when I have more news.

Another Step in the Journey . . . .

Anna learned to give herself her Humria shot this evening, and she did well!  Scott (my husband -- Anna's dad) was along for the instruction, and it was so good to have three brains soaking up all the detailed information.  We'll see what happens in two weeks when we're at home without a nurse to guide and direct her steps, but I'm confident that she'll do fine.

I remember the days when Anna was really little, and she used to cry on shot nights.  And now years later, she was calm and only a little nervous --- this was her decision and her choice.  No wallowing (maybe a little bit of grieving here and there, but not today!  Today was a step in maturity!)---just acceptance of this journey in life, and thankful for so many little ways that we've seen God along the way (and know that we will continue to see Him, because He never lets go of us!). 

So Here's the Scoop . . . .

Well, I can give you the bottom line results of Anna's appointment today (while it's still fresh in my mind---as we're traveling home!).

• There is no fracture of Anna's left TMJ (that's a good thing!)
• There is significant damage to the left TMJ,caused by past inflammation and scar tissue developing (very typical in joints of people with active or past-active rheumatoid arthritis)  That's probably not so good.  This damaged joint has caused her teeth to shift a bit.  (When the doctor and the resident were talking, they said at their first glance, it would appear as if her jaw had been broken.)
• Although this doctor would recommend replacement of the left TMJ, that is not an option until Anna is 18 years old.  (She is 15 and a half).
• Until then (possibly the summer between graduation and college), we need to think about orthodontia and probably having the wisdom teeth taken out.
• TMJ replacements are relatively new, and there is no knowledge on how long they will last.  Even if she has a replacement done at the age of 18, it may likely only last 20 years (they just don't know).  And then she'd be 38 and possibly need another replacement.

So here's more "fodder" for JA parents out there . . . As we were also discussing the fact that we'll probably soon be referred to a doctor at Hershey Medical Center who does both reconstructive jaw surgery and orthodontia together, this doctor brought up an interesting point.  (She also does similar surgeries, but Hershey is so much closer than Philly!)  While surgeons often take bone graft from a rib or the leg to do this reconstructive jaw surgery, there's a question about whether this will cause more issues---you know---using bone tissue from a body whose immune system already tries to attack good blood cells at the joint.  This doctor we saw today said that there is currently much discussion and debate (and no definite answers) among specialists as to whether this is a good idea or not.  I tell you this not to strike a note of fear---but to give you the information.  Something to really think about and pray about as we make decisions for our children.  It's questions and times like these that make me glad we have some time to pray and ponder, and we don't need to make a decision today about this. We didn't discuss this at length (no need to at this point), but it did hold my attention.

After our appointment (really liked this doctor and the resident working with her), we had several hours to spend in Philly until our train departed from home.  So we had an adventure.  I really wanted to take Anna to the Reading Terminal Market (she had never been).  So we asked a lot of "information people" a lot of questions, figured out which bus we needed to ride (such interesting conversation with a woman who was giving me advice and directions on where to get off the bus).  We ended up at the Gallery Mall, and Anna said, "Oh, it's okay if we don't get to the Reading Terminal Market."  But we persevered (despite some REALLY wacky mall directories in the Gallery Mall), and found the market.  As soon as we stepped into the Market, Anna said, "Oh, I'm so glad we came here!"  Such a fun place!  And she recognized it from the National Treasure movie.

Prayers Make a Difference!

I am the kind of person who thinks WAY too much!  Sometimes (many times) over-thinking can lead to worry---anticipating what MIGHT happen in the future.  I'm learning (God continues to tell me) NOT to do this!  To TRUST Him implicitly in every moment.

We've had a long stretch between appointments for Anna, but we're catching up now!  After rescheduling her ophthalmologist appointment two or three times, we finally were able to work out an appointment for this past Thursday (Valentine's Day).  We've been so busy that I haven't really thought about, nor have I been concerned about her eye inflammation, especially after good news for the past few appointments.   We recently decreased Anna's dose of Humira (from every 10 days to every 14 days).  In fact, it takes while to get the dosage changed with specialty pharmacies (that's been my experience), and I had just spoken with a few people to take steps to update the pharmacy with the change.  As the ophthalmologist was examining Anna's eyes, I happened to think, "Oh!  I hope the inflammation isn't back, because I sure would hate to jump through all of those hoops to get the specialty pharmacy to change the prescription again."  No need to worry (or to cause any confusion with the pharmacy).  Anna's eyes are both CLEAR!!!  Oh!  What great news!  (Makes me almost forget the years of endless appointments with the verdict of "trace cells.")  Smiles all around! Especially after Anna asked the doctor if she could give herself the eye drops before checking her pressures---he had never had a patient ask before, and Anna is the first patient he has given that permission to.  (But then again, he's know her for at least 10 years---sees her more often than some of her relatives do!)

And now the next appointment is on Monday, with the TMJ specialist in Philadelphia.  Over the past month or so, I've been thinking and thinking, trying to anticipate the results of this evaluation (not a good thing to do---who knows what the outcome will be?).  I know many, many people have been praying.  I, too, have been praying desperately for wisdom, discernment, understanding, a doctor who will explain everything so that we can understand it, and mainly for God to guide our steps (I know He has in the past---so many times---on this journey, and He has connected us with just the right people at just the right times--so I know I can trust Him to faithful in the future, as well).  Although we have not yet had this appointment, I have felt an internal shift in my overall attitude about Monday.  (That's why I know all of our prayers have been effective to this point and will continue to be.)

I had been feeling for weeks like I needed to gather up my courage and faith to face the specialists and the results of this evaluation.  I have been determined and resolved to do so.   But over the past few days, the words of Romans 15:13 have been running through my head.  My husband was the worship leader at church the other Sunday when we had a guest speaker, so besides the beginning part of worship, he also had the benediction.  And he chose to sing the benediction:  "May the God of hope fill you with all joy and peace as you trust in Him, as you trust in Him . . . so that you may overflow with hope by the power of the Holy Spirit."  Yes!!!  THAT is what I need---to be filled with all joy and peace by our God of hope, as I trust in Him.  Nothing ever touches us/affects us that God does not allow.  He loves us more than we can ever know, and He's right beside us, holding our hands as we walk this journey.  I know we can trust Him!  So we continue to walk this road, appreciating the prayers of so many, and watching for the little and big evidences of God working as we move forward.  We know that God will be faithful to complete the work that He has begun in our lives.  We also know that He is able to do immeasurably more than we ask or think.  And so we will anticipate Monday's adventure with joy and peace---no matter what the outcome.  (And we'll let you know what they say---we want to be able to share TMJ information with others who may need to hear it, as well.)

Let's Think of Something to Do While We're Waiting . . .

I received a message from a friend the other day---one who reads my blog!  (It's always nice to know that there are a few who actually read my contributions to cyber-space!).  She was asking how things were going, how the appointment went with the specialist, and how Anna's eyes are doing.  I realized that I hadn't updated the blog since November.  And here's the reason why---appointments have been postponed (by the ophthalmologist and the specialist).  The eye appointment in January has been changed to next week (early February), and the appointment with the TMJ specialist in Philadelphia has been postponed until February 18th).

In the meantime, we've been keeping busy.  We had great visits with many family members and good friends over Christmas.  We enjoyed having Anna's brother home from college for several weeks (he livens up the house with his personality and energy), and missed her older sister and brother-in-law who couldn't make it home from Nashville for the holidays.  Anna has been keeping busy studying for mid-terms, practicing her bassoon to prepare for County Band (concert this weekend), getting her lab work done (standing order every 6-8 weeks), and reading some good fiction books.  She's also on the Paint Crew for the high school musical, and that will keep her busy during the coming month.

So there's nothing new about her arthritis or uveitis during the months of December or January.  February will be a different story, as we begin to have more appointments with more doctors (so probably more blog posts as I sort through information and my thoughts on how that information relates to Anna).  I also need to arrange for an appointment for Anna with one of the pediatric rheumatology nurses.  Anna wants them to teach her how to self-inject her Humira, which she is now receiving every two weeks instead of every ten days.

Even though these past few months have been busy yet quiet on the medical front, I find myself thinking often about Anna's upcoming appointment in Philadelphia.  The first time seeing a new doctor or specialist always makes me just a little nervous, since I never know what to expect as far as personalities, whether I'll understand everything they're telling me, etc.  (fear of the unknown, I guess)  But I've also been hearing a lot about trusting God and praying a lot in preparation for big things coming up.  So that's where I am right now--reading my "Jesus Calling" (by Sarah Young) devotional each day (the whole month of January has been about trust), and already praying for wisdom and understanding and clarity of mind for our February appointment in Philadelphia.

I have absolutely no idea what the 2013 year will hold for us (no major life events to anticipate---that I know of, anyway---and that's very different from the past several years), but I do know that God loves us beyond our comprehension, and "He's already there"---knowing what our future holds (new Casting Crowns song)  there in the mystery and working out all of the details so that others will be able to see His love when we chose to trust and follow Him and experience His peace.

And the Journey Gets Interesting . . . .

(This is going to be a LONG blog post!  I'll warn you!  Lots of thoughts today.)

Ah!  How I love the ways God speaks to my heart in advance of "bumps in the journey."  I'm involved (have been for a few years) with a great ladies' Bible Study, and this week, when I began my homework, two thoughts from Lisa Harper, the author of our current study,  jumped out at me---resonated with me . . . . 

"A huge difference lies between pursuing God's heart and seeking gifts from His hands.  Between feeling sincerely grateful for divine blessings and feeling like you deserve to be blessed . . . . . . ."

                         and then 

"The true opposite of arrogance is security.  It's the deep-seated confidence that God holds us in the palm of His hand and nothing can separate us from His love."   *from "Malachi:  a love that never lets go" by Lisa Harper, published by LifeWay Press, Nashville, TN  2012

Pursuing God's heart and security.  I'm learning to do the first and to really understand the second.  So I began this week feeling sincerely grateful for all the blessings in our lives and feeling secure and anchored in God's love and care for us.   That's the best place to be mentally and emotionally when there are so many areas in life where I also feel that that the Lord is saying to me, "Pay attention, here!  Focus on the tasks at hand---now is not the time to have the 'cruise control' on!"  (know what I'm saying?)

So we head to Hershey today for Anna's appointment with the pediatric rheumatologist---it's been about four or five months since we last saw him.  We were able to give him the good report on the eyes from the ophthalmologist, and both were agreeable to changing Anna's Humira dose from once every ten days to once every two weeks.  Good news!  He did say that from his experience, it seems that once young people get through puberty, the eyes seem to settle down a lot.  Makes sense to me---the onset of puberty was when I noticed that both the eyes and the joints seemed to become issues again for Anna.

And then we discussed the TMJs.  Anna had been noticing that there are times when her jaw locks into place momentarily, and sometimes it shifts.  When the doctor was examining all of Anna's joints as he usually does, he manipulated her jaw and asked questions, and found that her jaw shifted a bit as he did that (more on the one side than the other).  I don't recall that happening at any previous appointment and joint-check.  Her last MRI was in early August, and the results indicate that at some point, when Anna had active arthritis in the TMJs, the inflammation has caused the joint to fuse.  But Anna has continued to use her jaw (to eat, talk, etc.), which has caused a probable fracture (besides the deformity of the fused joints).  Anna's case is not severe, and she's not at the point where something HAS to be done (she can still eat and talk---the TMJ issues which she experiences are occasional---not constant).  However, it now seems advisable to have an evaluation by a doctor in Philadelphia.  Evidently, he's the "go-to" specialist on the East Coast for TMJ replacements.  But Anna heard Dr. G. say, "Just because you go to see him doesn't mean that Anna has to have immediate surgery."  In fact, it's not urgent.  It's okay if we just make contact and strive to make the appointment during a school break or even sometime this summer.  Dr. G. has referred other patients who had issues much more severe than Anna's.

After we consult with this specialist, and after we see Dr. G. again in March, then he's going to refer us to another specialist at Hershey Med who does a lot of work with the TMJs and orthodontia.  But we're going to take one thing at a time.  

And so the journey gets interesting again.  We get to learn a whole lot again.  We get to meet more specialists and be thankful that God has given them so much knowledge and intelligence.  Although we don't personally know anyone who has been on this particular road before, it sounds as if Dr. G. has other patients (and their parents) who have, and I told Anna that I'm sure he would be glad to connect us if we feel at some point that we want to talk with someone who has experience with this.

So for now, we continue to follow this path step by step, secure in our faith and the peace that comes from knowing that we are never alone on this journey.

Still Just a Trace . . . . .

Our journey continues, but we're pretty much on an even keel.  Anna had an appointment with the pediatric ophthalmologist about two weeks ago, and her right eye is clear of inflammation.  The left eye is ALMOST clear--the doctor thinks there's just a trace of inflammation---almost too minimal for him to see.  He's willing to have the Humira decreased if the pediatric rheumatologist is willing.  We visit the pediatric rheumatologist next Tuesday.  At that appointment, we'll hopefully get the results of Anna's MRI on her TMJs.  We haven't yet heard about that, but it's okay (if I were worried about it, I would have e-mailed or called earlier)---I know from past discussions with the doctor that even if Anna continues to have active arthritis in the TMJs, there needs to be a lot of thought and care regarding the frequency of injections.  Over the long term, too much cortisone injected into any joint can affect the tissue, and cause other problems.

In many areas of my life, I've been thinking a whole lot about trust . . . . the people I trust, the people I don't trust, how I react to both groups, etc.  I am so glad that I'm at a place in my life where I feel that I can trust Anna's doctors---not to be perfect people or to make the perfect decisions, but to make wise decisions, and to know that they are carefully considering and weighing our options for Anna (with a whole lot more knowledge and intellect than I have myself!).  I continue to pray for them as they make decisions for us to choose from (and they do give us the background information and pros and cons we need to think about those decisions---I'm thankful for that!).  I pray for our family to know the direction which we need to go when various options arise, and I am so very thankful to God that Anna's quality of life is almost as "normal" as a teenager's life can get (if you don't count the Humira shots every ten days and the Methotrexate and Leucovorin pills she takes each week).  God has used this journey for her to develop in her a compassionate heart for people (among other character qualities).   Our Creator has promised that He can use any situation for good for those who love Him---there's always some joy to find in the journey when we have a solid Anchor for the Soul!

"Normal" Life for the Next Ten Weeks, at least . . .

Our summer is coming to an end, and it'a been an extremely busy one, with four weddings to attend.  While that meant some fun events and quite a bit of time spent with family and friends and traveling, it also made the summer seem to fly!  Cross-country pre-season training begins on Monday, and school starts two weeks from then.  Anna will enter the high school as a freshman this year.

Since I last wrote an update, Anna has had an appointment with the rheumatologist, another MRI of the TMJs (no results yet), and this morning she had an appointment with the ophthalmologist.  The rheumatologist appointment was basically uneventful (that's a good thing!), except for the fact that Dr. G. has decided that Anna should really have routine MRIs every six months, given her history of active arthritis in the TMJs (hence the MRI last week).  Our insurance covers those costs (thank the LORD!  they are expensive!), and since her arthritis is mostly asymptomatic, I welcome the MRIs, because then we have a better picture of what's going on.

That also paves the way for some other decisions to be made.  While Anna needs orthodontic work, she cannot have a lot of metal in her mouth to have MRIs done.  Since I now know that she will have regular MRIs, I can discuss this issue with the orthodontist and see if there is anyway to improve some of Anna's bite issues and teeth issues with something that is not cemented to her teeth.  I have no idea if that is a possibility, but it at least gives me a place to begin a conversation with the orthodontist and discuss some possibilities.

Dr. G. also mentioned the possibility of decreasing the dose of Humira (depending on how the next few months go).  That will depend mainly on the uveitis.  Good news on that front this morning!  Anna's eyes are totally clear of inflammation once again!  GREAT way to end the summer and start the school year.  No more daily eye drops, at least for the next ten weeks, when we have the next eye appointment.

So for Anna, for the next ten weeks at least, life will be relatively normal (save for the weekly Methotrexate, twice-weekly Leucovorin, and Humira every ten days).  While years ago I would have spent time thinking (and worrying) about all of this powerful medication that goes into her body to severely suppress her immune system, I have settled into a place where I've learned to take each day for what it is and focus on what is true and good.*  What's true for today and this moment?  Anna has a great quality of life.   For that I am very thankful.  I'm thankful for doctors who are moderately aggressive and do all that they can to ensure that active arthritis and uveitis is not a constant thought at our house (for today).

I know that many children and teenagers with various types of arthritis and rheumatic diseases still deal constantly with pain and inflammation (even children and teenagers who see the same doctor as Anna---with a moderately aggressive approach to battling these diseases).  I have no answers as to why some families get little relief even with powerful medications while patients like Anna respond well and can live a normal teenage life.  I share this blog as a possible ray of hope for any parent who is where I was mentally and emotionally over 12 years ago when we first received the diagnosis.  I wanted to know what Anna's future would look like and scoured the Internet for stories of other Juvenile Arthritis children and teenagers.

I memorized the following verses when I was a child, and lately I've been remembering them and thinking about them a lot --- remembering where my focus should be and remembering that there is a peace available which is not always understandable.  I share these verses here, just in case they speak to any of you:

Philippians 4:6-8 (New Living Translation)

⁶ Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ⁷ Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

⁸ And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 

 

Update since May . . . . .

We've had a busy spring!  Since I last posted, Anna had bilateral injections to the TMJs (she's always been mostly asymptomatic with the TMJs, so I'm thinking that they are helping but don't know for certain).  We also had an eye appointment.  There is a trace of inflammation in the left eye again---but nothing overly concerning.  Back on Pred Forte eye drops (once daily to the left eye).  Pressures are fine.  We can handle all of that.

Life goes on, and Juvenile Arthritis and uveitis is taking a back seat to everything else in our life at the moment.  (Thank the Lord---it doesn't consume our lives---but I'm very thankful that her disease is mild and stubborn instead of raging, as some children and teens experience.)  Anna has a summer job!  (She wanted to do this!  We didn't tell her she needed to!).  It's a good job with good hours for a 14-year-old, and she's having fun, making new friends, and learning things.

We also took a trip to Nashville, where Anna's sister Abby was married just last weekend.  Two more weddings to attend this summer, but I'm thinking that the next month overall may be a little less busy than May and June (hopefully).  Anna will see the pediatric rheumatologist in July, start pre-season cross country training in August, and enter high school as a freshman this fall!