Monday, February 18, 2013

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.

Saturday, February 16, 2013

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.)