Thursday, December 19, 2013

Some Updates

We've had a few appointments since I last posted, so I have a few updates to share.  We are very pleased and thankful that the appointment with the ophthalmologist showed that the inflammation in Anna's left eye is down to a "trace," and her pressures were acceptable, so she is down to one drop of Pred Forte in the left eye daily.  Not crazy about little bumps in the road, but so thankful that maybe this is just a blip and will soon be a memory.

Anna's elbow is still a bit of a bother in the mornings, but we've had discussions (between Anna and myself) about it.  Dr. G. (the pediatric rheumatologist) had suggested that she could take ibuprofen up to three times a day to help with that, but she doesn't want to do that at this point.  I told her that she needs to talk to Dr. G. about the pros and cons of just living with the pain vs. taking the ibuprofen.  (Or he may even adjust her other medications.)  If this continues, I know it will be a topic of discussion at the next appointment in February. (In less than two years, she will be considered an adult by the medical community, so she is taking responsibility for listening carefully at doctor's appointments and being part of the decisions, and being responsible for her medications---she's always been intrigued by the body and medical stuff, so it doesn't take great effort for her.)

I've included Anna's panoramic x-ray from the Lancaster Cleft Palate Clinic.  You can see the vast difference in the left vs. right TMJs, and this is why reconstructive surgery is necessary for Anna.  So we are "on the road" for this new journey---which will take about two years.  One year for the orthodontic preparations, and then surgery after that, and then some post-op orthodontics and follow-up.  So many feelings and emotions---a little bit of trepidation in stepping out to have major surgery done, knowing that it will bring temporary pain and weeks of healing, the little bit of excited anticipation at taking steps to fix something which is damaged.  But I have to tell you that the overwhelming feeling I have is PEACE in this decision.  And this is huge, because as I constantly pray for wisdom (knowing that God promises to give wisdom in abundance when we ask, as found in the first chapter of the book of James) and direction on this JRA journey, I do my best to listen to God, who hardly ever speaks audibly to me!  But He has so many other ways which I've learned to recognize.  And so with this group of doctors at the Lancaster Cleft Palate Clinic, and the answers to my prayers about the cost of the orthodontics (I was gathering information and gearing up to "present my case" to the insurance companies, only to be told that Anna's supplemental insurance through the state will cover all of her orthodontic care for this surgery---what a huge blessing and answer from the Lord!), we have experienced so many "green lights" as we've taken steps to see whether and when we should take steps in this direction.  And that peace that I spoke of earlier has been so very present every time we think about this and pray about this and make the trip to Lancaster.  Looks like we'll be doing that a little more often in 2014.

Friday, November 22, 2013

New Stuff, MANY Thoughts (I've saved them up!), and Listening to "The Voice of Truth"

 So much has happened in life since I last posted . . . .and we are overdue for an update here (this will be a LONG post!).  Anna became a first-time aunt in September -- one day after her 16th birthday!  We've been to Tennessee and back for a visit.  She also now has her driver's permit, so she and her dad are fitting in driving practice as our schedules allow.  (Scott is a much better and more patient teacher than I!)

We went through August, September, and October without many appointments, and that was a nice break/reprieve.  However, November and December seem overly FULL of appointments now!  Anna saw her pediatric rheumatologist last Friday, and today was a visit to the pediatric ophthalmologist.  I know that many scour the internet to find "real life" stories about children and teenagers with arthritis---I know I did back in 1999 when Anna was first diagnosed.  I wanted at least a vague picture of what might be in store---what kind of life could I hope for for my youngest child?  This type of thinking and questioning just comes with the struggle---the grieving process when you have a child with a chronic disease, when it seems like every expecting parent will just be happy "as long as it's healthy!"  Believe me, you CAN have a good and joy-filled life, even if you end up dealing with an on-going illness or disease.  So when we have good news, we share.  When we have not-so-great news, we also share.  I'm a realist.  This is life. We deal with "what is."

While I realize that in the early years it was easy for me to whine and sometimes wallow as I worked through my feelings, I don't want to do that anymore.  I don't want or need people to feel sorry for us.  Everyone has something that they deal with.  One of our issues in our family is Juvenile Arthritis.  I do appreciate prayers, because I know for a fact that prayer changes things---and usually changes us.  I know that God could choose to heal Anna completely, but I also know (because He told me early on, and He has given Anna some intuition, as well), that complete healing is not His plan for us in this journey at this time.  We've been blessed with so many years of mild arthritis and uveitis that was finally brought under control when Anna started Humira.

A month ago Anna mentioned that her neck was stiff.  So we mentally filed that information, checked in with her periodically about that issue, and knew that we needed to share that information with her rheumatologist.  On the morning of her appointment, she also mentioned that she's been having some trouble with her one elbow.  Anna rarely experiences severe pain, even with active arthritis, but she's noticed that her range of motion in her neck has decreased, as well as in her left elbow.  They don't hurt, she says, unless she tries to move her neck or elbow past the point of where it wants to move.  Nothing really significant or serious---but enough that it feels like a different direction (or maybe just some added bumps) in our JA Journey.  We'll deal with it.  For now, Anna can take ibuprofen (up to three times a day) if she feels like she needs it. Her TMJs are still an issue.  The last MRI showed the right side looks a bit better, but the left side still has mildly active arthritis.  Today, we found out that after almost eighteen months of clear eyes, she has mild inflammation in her left eye once again.  So Pred Forte eye drops are prescribed (twice a day), and we go back in two weeks to see if that clears it up. 

So what does a mom do when the road ahead looks like it may be more challenging?  I admit that it's easy to let the worry take over---worry for Anna's future, worry that new joints are being affected by arthritis (it was a lot more "comfortable" when we were only dealing with only the knees and TMJs, with the eyes thrown in for good measure).  But as I've struggled to know the appropriate response, I've been remembering a verse that I've been meditating on for several months:  "Be patient in trouble and keep on praying."  (Romans 12:12 NLT).  I've been hearing songs on the radio that constantly remind me that I can trust God, that He is with us always.  There's an older song that keeps coming to mind---a song from Casting Crowns, called "The Voice of Truth."   I know that we "are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places." (Ephesians 6:12 NLT), so whenever I hear the whispers of worry and doubt, I am going to choose to listen to "the Voice of Truth." (link to video below)

Besides the lyrics of this song, what has "The Voice of Truth" been telling me over this past week when thinking and worrying begin to take me to mental places where I don't want to go?:

"For you know that when your faith is tested, your endurance has a chance to grow." (James 1:3 NLT)

"But the Lord stood with me and gave me strength."  (2 Timothy 4:17)

"I have made you and I will carry you; I will sustain you and I will rescue you."

"Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you, He will never leave nor forsake you."  (Dueteronomy 31:6)

"God can restore what is broken and change it into something amazing.  All you need is faith."  Joel 2:25 

And especially this week (I love the visualization of walking through water that seems to be getting deeper and deeper---and knowing the God is with us in the midst---sometimes that's just how life seems)  From Isaiah 43, beginning with the second part of verse 1 (bold emphasis at the end is mine, because that verse and those words seemed to jump out at me when I was reading this passage):

  “Do not be afraid, for I have ransomed you.
    I have called you by name; you are mine.
When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.
For I am the Lord, your God,
    the Holy One of Israel, your Savior.
I gave Egypt as a ransom for your freedom;
    I gave Ethiopia and Seba in your place.
Others were given in exchange for you.
    I traded their lives for yours
because you are precious to me.
    You are honored, and I love you.

But He's also reminded me of the verses I found back in 1999, from 2 Corinthians (NLT):

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

So we gather up our courage, hold tight to our faith, remember that we are precious to God, keep praying in trouble, and know that God is guiding us, and that His timing is perfect.  I'll update again soon---Anna has an appointment with the Lancaster Cleft Palate Clinic people after Thanksgiving.  We'll see what they say about Anna's active arthritis and the time frame for orthodontics and eventual jaw reconstruction. 

Sunday, September 08, 2013

Moving Right Along . . . . at a measured pace . . . .

We've received good news since I last posted.  Anna had an appointment with the ophthalmologist in mid-August.  Her eyes remain clear of inflammation---for over a year now!  Since last June!  Oh, the joy of that burden of concern being lifted off of our shoulders (at least for the present!).  I was asking the ophthalmologist some questions about Humria and such----because of Anna's TMJ issues, it's up to the rheumatologist to make decisions regarding the Humria and Methotrexate (the ophthalmologist would only recommend changes when Anna's uveitis was an issue---he doesn't prescribe systemic medications).  And can I tell you that I really am not eager to make any sudden changes?  We haven't seen evidence of any side effects from either of the medications (she's been on both for years), so I'm comfortable with them for now.  Sometimes (for me, anyway) I like to relish the peace which comes from clear eyes and quiet joints---at least for a little bit---before gathering up the courage to make any changes, especially when it seemed to take so long (all those years of puberty) to get everything under control.

I feel like we're taking a measured approach to the upcoming orthodontics and reconstructive jaw surgery.  I've begun making phone calls to determine insurance coverage for the orthodontics.  According to my member handbook for the health insurance, my interpretation of the wording under "Patient Protection and Affordable Health Care Act of 2010 Amendment" would indicate that the orthodontics should be covered.  Now it's a matter of getting the content of these two pages to the right people to debate my point.  Still working on that.  (Apparently, the Authorization Department only allows doctors to contact them and debate the issues----not the patient or the patient representative.)  Measured approach . . . . constantly remembering that in the midst of this battle, God tells me "we are the aroma of Christ . . . "  (2 Corinthians 2:15-16) so I need to be sure that I approach this in such a way that I am reflecting character qualities of God and His indescribable love for us (because that's what God calls His children to be and do), and not go to battle with sarcasm and anger.  God calls us to KINDNESS, and that begins with me, in every situation.  So in the words of Disney's Thumper, "If [I] can't say something nice, don't say anything at all."  Still working on that (for those who know me well and know when I've said things I shouldn't have!).

So while we're working on the insurance end, I've also been in contact with Anna's pediatric rheumatologist to discuss getting an MRI before we see him in November, so that we can discuss the results, see if the disease is quiet in the TMJs, and see if we can move forward with the Lancaster Cleft Palate Clinic.  He plans to schedule an MRI in October.

Until then, Anna keeps busy with cross country season, bassoon lessons (practicing for District Band tryouts), and youth group activities.  (Plus waiting for her first nephew to be born any day now!)  Life goes on, and we are determined that Juvenile Arthritis not define our lives---it's a part of Anna's life, but not who she is.

Monday, August 12, 2013

Ah! We Have Some Direction! . . . .

So we had the appointment at the Lancaster Cleft Palate Clinic last Tuesday, to discuss Anna's TMJ issues (past active arthritis; significant damage to the left TMJ).   What a GREAT team of doctors and staff---and they are indeed a TEAM.  The primary doctors appropriate to Anna's care were the oral surgeon, the orthodontist, and the plastic surgeon (there were other specialists available, but Anna did not need an audiologist nor a surgeon who specializes in dental implants).  One of the best aspects of the appointment was their candid discussion and the time they spent with us---we didn't feel rushed at all, and they wanted us to understand everything they were saying and recommending and why (I had shared a little bit of our experience with the doctor in Philadelphia and why we had no interest in returning there -- very rushed, didn't elaborate on the reasons behind her recommendations, etc.---left us with nebulous information and no concrete answers).

While these doctors are familiar with the TMJ replacement procedure, but they do not recommend that for Anna unless her TMJs (at some point in the future) stop functioning altogether (and they explained all the reasons why, which I really appreciate and understand).  They DO feel that Anna is a good candidate (and in need of) jaw reconstruction (and orthodontics, which go along with jaw reconstruction surgery).  They would reconstruct both the upper and lower jaws.  This would entail probably about two years of orthodontics, extraction of wisdom teeth, jaw surgery, and then a few months to a year of orthodontics to finish up.   They also seemed very pleased that Anna has just finished up physical therapy to strengthen the muscles which help support the TMJs (they even asked for the name of the physical therapy group, because they said they have not often found physical therapists who have experience with TMJ issues).

For the past few years, I have been thinking about Anna's TMJ damage, wondering what to do and wondering about the timing of everything---and praying fervently for guidance and direction, because I didn't have any answers, nor did I have enough medical knowledge to feel that I had a good handle on the issue or ways to deal with it.  I also found myself overthinking the entire thing and intentionally putting it all out of my mind for weeks at a time---and purposely choosing not to worry or fret (not always easy).

Have you ever had a day/week/moment when things and ideas and thoughts all seem to fall into place and you know deep in your heart that this is what needs to happen?  That's how I felt last week during and after the appointment.  Anna did, as well.  After meeting with the Philadelphia doctor, she said that she didn't feel that she needed or wanted major jaw surgery any time soon.  After this appointment with the team of doctors, it's almost as if she's ready to begin the process tomorrow!  We had a choice to use an orthodontist closer to home (Lancaster is an hour away), but Anna instantly said, "No.  I want to do it here."  (We like the orthodontist we've used in the past, but Anna loved the team approach and the fact that these doctors communicate so well with each other---and promised to keep her pediatric rheumatologist informed---we're usually the ones who are telling one doctor what another doctor has said or recommended).  The only aspect that makes me hesitate just a little is the fact that insurance may not cover much of the cost of the medically necessary orthodontics, and they are EXPENSIVE!!!  (The doctors seemed certain that the surgery will be covered, since Anna has a diagnosis of arthritis and significant damage.)  Much more expensive, even, than the "phase 2 cost" which was quoted to us a few years ago from the original, local orthodontist, and at the time I thought that price was rather exorbitant.

So . . . . where do we go from here?  First and foremost, I continue to pray, and I've been in awe of glimpses of God at work in little and big ways in the process so far.  As long as I continue to see Him working and opening doors of information, we continue to walk in this direction.  The orthodontist said that he is willing and able to write to the insurance companies (Anna has primary insurance and secondary insurance through the state, because of her chronic condition)---to explain why the orthodontics are medically necessary.  Anna needs the surgery, and in order to have surgery, she has to have orthodontics.  The billing clerk was less than optimistic but said we could try if the doctor said that he would write letters.  The team of doctors also talked about needing to know that the arthritis in the TMJs have quieted down for the most part.  So at this point, I'm not sure if we will need and want one more MRI before the orthodontics are put in place (once she has all of that metal in her mouth, we will be unable to do MRIs).  That will be up to her rheumatologist to decide and order.

On a less pressing note, the Lancaster doctors told Anna that they couldn't promise to be finished the process before senior pictures (she's entering 10th grade), but possibly before her senior prom.  Anna has already decided (that afternoon) that for senior portraits, she just wants a picture taken for the yearbook, and we can wait for a more extensive photo shoot after the surgery is done and the braces are off, even if it's after graduation.  She said she's been thinking a lot about what she might look like afterwards, but she has no idea (hence, the patchwork picture at the top---unsure of how her face will look once everything is "put back together).  The oral surgeon was studying Anna's face carefully (Anna told me later).  He says that whenever he looks at patients, he sees visions of what they will look like with reconstructive surgery.  He wasn't kidding, and I believe him---he's that sort of person.

Thanks for your continued interest in Anna's JRA Journey.  We are always grateful for your thoughts and prayers as we travel this unfamiliar road, and we are also grateful for the love and support we feel from so many in our local and internet communities.

Saturday, August 03, 2013

Waiting to See Where this Journey Takes Us Next. . . . .

We had an appointment with Anna's pediatric rheumatologist about two weeks ago.  We're still keeping an eye on the TMJs, and the next step is to see a group of doctors at a clinic in Lancaster.  It's actually a "Cleft-Palate Clinic," but Dr. G. has referred several patients with TMJ arthritis issues to this group of doctors.  So it's Anna's turn to be evaluated there.    That appointment is on Tuesday morning.  (So I thought I'd better update my blog now before I have another lengthy update!)  All of the options for addressing Anna's TMJ issues (significant damage to the left side because of past active arthritis) have been swirling around in my mind for quite some time, and it's been like looking at pieces of a puzzle being unsure how they all fit together to form a picture, especially considering other activities and interests in Anna's life.

I was so very grateful to have a few of my swirling questions answered at that appointment.  I wasn't necessarily anxious before the appointment, but I did leave with a real sense of peace.  (So very thankful for that!).  No need for a set schedule for these upcoming possibilities for dealing with the TMJ issues.  If we're looking at surgery, they would probably need to wait a little bit anyway, since they need to be sure she is finished growing.  So her ped. rheum. advised her to enjoy her years of high school, work to audition for District Band (playing bassoon), and don't worry about possible surgery (and subsequent healing) until maybe after graduation.  (Anna will be a sophomore this fall, so we have a little bit of time.)

I had another question about Anna's future (another one that's been swirling around in my head with no real answers).  Our high school requires students to begin thinking about possible future career choices, and three related job shadows are required before graduation.  So Anna has been working to narrow down her passions and areas of interest.  But then I had a question about studying or working abroad---is that possible, and how does it work when she is on a biologic medication (when it's delivered by UPS to our doorstep once each month, and then refrigeration is required)?  Dr. G. had an answer for that, as well!  He's already had at least one patient who has studied abroad, and her medication was delivered to her there.  He did suggest that we stick to Europe or South America, and probably not many parts of Africa or other third-world areas.  If Anna decides to study or work abroad at some point, he will put me in touch with this other patient and parent.

Dr. G. did mention that it's been several years since Anna has had any arthritis flares in her knees.   He said that if it weren't for her eyes (although they've been clear of inflammation for the past year) or her TMJs, no one would ever know she has arthritis.  I know the Anna has a mild case, and because she has such a high pain tolerance, she doesn't present like a vast number of JA children, teens, and young adults.   Did you know that it's very possible to be so very thankful, and yet feel a little guilty at the same time?  I know that's a natural reaction!  I've read similar posts from other JA moms---instead of "survivor's guilt," it's more like "my child's doing so well" guilt, when we know others are suffering.

Anna finished her iontophoresis sessions and her physical therapy sessions.  We were able to do over half of the iotophoresis treatments at home.  The physical therapist was working on some posture issues with Anna---telling us that it would help her TMJs.  She still occasionally does some of the exercises, and she didn't mind the few sessions with Bob the Physical Therapist.  He would wrap her neck with heat for a little bit, stretch her neck and back muscles for a bit to loosen them up, and then do some strengthening exercises.  For the last session, Anna said it was definitely like a workout!

Just a note to anyone who may end up with the prescribed treatment for the TMJs---it's relatively new, and the insurance companies have no clue what it is we're doing, so they aren't into covering the cost of the pads ($10 per pad---2 pads per session---8-10 sessions), and they didn't cover the cost of the medication that I needed to get from the pharmacy for the home treatments (they did cover the cost for the medication delivered to the PT office).  Maybe this will change in time---the ladies at Dr. G.'s office tried explaining everything to the insurance companies, and none of them understood, and refused to cover those costs.

We'll see what Tuesday brings.  We've had other things going on in our extended family that has taken up time and energy, and we've spent a lot of time praying over those issues.  I haven't been focusing on Anna's upcoming appointments, and I haven't been anxious about it at all, so it's not been burdening my heart.  However, there were a few details that needed to be worked out (a referral was required by Anna's secondary insurance, which seemed unusual to me---they've never required one before for any of her Hershey visits).  BUT, this requirement ended up in a conversation with the managed care specialist at our family doctor's office.  That conversation was interesting, because it was one of those God-moments, as she explained several things that happened---extraordinary perfect timing with people being in the right place at the right time because they were exactly the people she needed to talk to, etc.  I have no idea why all of this is necessary, but it all caused me to see how God is going before us---putting various people into just the right place at just the right time to ease the way and take care of some of the details.  And then the managed care person was also warning me that the insurance companies usually drop everything like a hot potato when anything "TMJ" is diagnosed---they won't cover ANY kind of treatment for TMJs.  Curious, because I know that Dr. G has already had several patients go through with this clinic and this procedure, and surely they didn't do it without any insurance!?!  (Maybe there's a different way these doctors code things to show that this is NOT cosmetic treatment, but treatment that affects a person's health and well-being?) I don't know, and I guess we'll get answers on Tuesday.  But as I was reminded (from a recent children's sermon at church, and a song that's been going through my head), we have a God who goes before us---our Rock and our Shield!  In troubled times He will provide, and we will not want.  No matter what Tuesday brings, we will trust.  (I'm also so very thankful that Anna is so mature in so many ways, so not hung up on her looks---but more concerned about her heart and who she is on the inside, and who God wants her to be.)

Such a long blog post!!!  If you have made it to the end, I very much appreciate your interest and your prayers for Anna and for our family.  THANK YOU!

Wednesday, July 03, 2013


Two months ago, Anna's pediatric rheumatologist decided that the next best option for Anna's TMJ issues would be Dexamethasone Iontophoresis.  He was agreeable to delaying this course of treatment until July (Anna's schedule was VERY full in June, and our insurance provider changed as of July 1st.).  Because this conversation happened over the phone, and not in an exam room with Anna present and listening to the conversation and asking any questions she might have, Anna was less than thrilled with the described treatment.  (She doesn't like anything about arthritis to interrupt her busy life, and this seemed like it would be an interruption to her summer.)

For the past two months, I've been doing what I have learned to do when faced with challenging situations (like finding a physical therapist with whom we could connect and a having teenager who is not embracing the next course of action)---I prayed and prayed and prayed.  And I continued to take steps towards doing what we needed to do.  I asked friends for any physical therapist recommendations (we could have gone to Hershey Medical Center, but for the frequency of our visits, I really wanted to be closer to home), and I prayed for wisdom and guidance.  A good friend highly recommended a physical therapist just three miles from home, and everything she described about him sounded like just the type of person that both Anna and I would get along well with.

Today was Anna's first appointment with the physical therapist. A new experience for us.  But instead of feeling nervous---I was at peace (except for maybe a pinch of momentary anxiety of how Anna would accept all of this, but knowing it needs to be done)---Thank you, Lord Jesus!   I was thinking this was just an "evaluation" visit (that's what the receptionist had scheduled).  But as the PT evaluated Anna's issues, he found some extremely tight muscles which were not helping her TMJ issues at all---so he spent a good amount of time stretching her neck and back muscles, patiently explained several at-home exercises he would like her to do to help with her TMJ issues and her range of motion in her neck, and actually applied the first dose of Dexamethasone Iontophoresis.  Thank the Lord that we didn't have to stay there for the ninety minutes she needs to have it on!  We went home and then picked up a pizza instead of going to the pizza place to eat.

Anna is connecting so well with this PT!  (Although she told me I shouldn't rave about him, since we have only met with him once!)  She did say that if we know anyone who needs physical therapy, we should recommend "Bob."  She said that all that stretching felt so good afterwards, and she's already doing some exercises to improve her posture (which will help her TMJ issues, Bob says).

I am so glad that we can eagerly anticipate this treatment (maybe nine more over the next 2-3 weeks), and that we should be able to do some of them ourselves at home.  We can move forward without dreading the reluctance of a teenager!

I am so grateful for all of the support and prayers that our friends and family provide.   THANK YOU!

Tuesday, May 07, 2013

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."  

Sunday, April 07, 2013

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.

Thursday, March 07, 2013

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!). 

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.)

Thursday, January 31, 2013

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.