Letter of Gratitude

The following is a copy of a letter recently sent to Dr. Hey expressing our gratitude.

February 17, 2013

Re:  Ashley ________

Date of Surgery:  05/31/12

Diagnosis:  Scheuermann's kyphosis

Surgery:  T3-L3 instrumentation and fusion

Dear Dr. Hey,

Just wanted to drop you a note with an update on Ashley's recovery.  She's now almost 9 months post surgery and nearing the end of her senior year and very busy.  Most amazingly, she's not had to take even a Tylenol or ibuprofen for back pain this year.  No more low back pain or neck pain at the end of a school day as before.

She is so relieved to have this surgery behind her, and she is really enjoying her new posture.  She comments from time to time that she can hardly believe it's corrected.  We are amazed at the difference in the way clothing fits her.

Sitting on bleachers for sporting events used to really aggravate her back as well as make her very self conscious about her hump-backed appearance.  She now does this with no problems, and her posture is near perfect.  Ashley's primary consideration for surgery, was increasing discomfort, but as her parents, Johnny and I now know that it was affecting her emotionally more than she was admitting.  We had all become quite used to Ashley's posture before surgery, and it was only after surgery and witnessing the improvement that we realized just how much of a deformity she had prior.  Since surgery, I have caught her in a full-length mirror just staring at her back and posture and remarking that she can't believe it has been corrected.

Well, enough about us.  Let's turn the spotlight.  Our thankfulness to you, in addition to Leslie, the entire OR staff, your office staff, and Duke Raleigh Hospital cannot be adequately put into words.  Thank you, Dr. Hey, for allowing God to use you in such a special way.  He has truly granted you great knowledge along with extraordinary skill as a surgeon.  From our first visit in your office in 2008, we knew we had found the right physician for Ashley, and we are forever grateful to you for your care and compassion. You always took the time to answer our questions in great detail and we never felt rushed.  Further, we were relieved to find that you were not just surgery happy.  From our first call to your office back in 2008 to the calls after surgery, each were handled professionally and timely.

I cannot close without commenting on Duke Raleigh Hospital.  Ashley's entire care team was amazing.  Their knowledge, medical care, and compassion was unsurpassable. It was truly a humbling experience.  We can honestly say that we did not have even the slightest issue with any part of her care.  We never encountered a moody personality, a lazy spirit, a rushed demeanor, or a pass the buck to the next shift attitude.  The staff was both professional and personable.

Please accept our apologies for this long overdue note.  The link to my blog for Ashley's surgery is ashleyskyphosisjourney.blogspot.com.  I really did intend to document more, but days pass so fast.  Still, I think it will provide future patients some good insight.

One last note…I noticed the post you wrote about holding clinic out in the garden at Duke Raleigh.  That garden holds a very special place in our hearts, too.  On May 31st during Ashley's surgery, Nurse Kelly had just telephoned with an update that the osteotomies were beginning.  The updates were so appreciated. An hour can literally seem like a day when you are waiting for news of your child's progress while undergoing surgery.  There is a very odd (for lack of a better word) feeling that comes upon a parent when they are told, "About half the screws are in place," or "the osteotomies are beginning."  Perhaps we had done too much research and knew too much detail about what all this meant and what actually was taking place in our daughter's body.  When Johnny received the call about the osteotomies, I could sense his heart was weeping on the inside.  He asked to be excused from family and took my hand and we walked out to the Duke Raleigh garden and there under the arbor, Johnny and I emptied our hearts out to God.  We were emotionally deplete.  There was absolutely nothing we could do for our baby girl but pray, and pray we did.  God met us there in that garden in the darkest hours of our lives.  So, when you talk about the garden being a special place, we too can attest to that.  I couldn't help but think about Jesus' prayer in the garden before His betrayal. After Ashley's six week followup appointment, we revisited the garden, only this time Ashley walked with us as vibrant as ever before, and there in the same spot, we as a family prayed and thanked God for his extravagant mercy and grace upon our lives.

Dr. Hey, our prayer is that God will continue to strengthen you and use your talents to impact the lives of others.  May you and your family be blessed for the sacrifices we know both you and they must make for this to be possible.  We thank you from the bottom of our hearts!

Sincerely,

The _______ Family

Johnny, Crystal, and Ashley Brooke

Update and Before/After Photos

Just wanted to give a quick update.  Now 8 months post surgery and absolutely no pain or complications.  Ashley loves her new posture and is so thankful this surgery is finally behind her.  She is looking forward to college and her future.

For comparison, Ashley wore a formal/party dress for her 16th birthday as well as a similar dress for Homecoming 2012.  And, she just happened to be crowned Homecoming Queen!  Couldn't resist...I'm her mom and extremely proud of her.  Check out the difference in the way dresses fit her.  Ashley has not lost a lot of weight since her 16th birthday, the difference is from her posture being straightened.  Dresses for some reason were always a nightmare to fit, but as you can see, not anymore.

Pre-Surgery, 16th birthday

She's not going to like this one (her bestie has just stuffed her mouth full of birthday cake)!

This is a good pic because it demonstrates how her chest was rounded down onto her stomach and her hips were pitched forward.  The kyphosis always made her look heavier because of the frontal compression.

Post surgery, November 2012, Homecoming Queen

Beautiful Posture

Homecoming Banquet

So, folks, that's the update for today.  She's doing fantastic and we give God all the praise and thanksgiving for gifting Dr. Hey with his superb surgical talents.

Three Months Post Surgery

How time flies!  I know, that is so cliche, but it's so true.  Here we are now just a week past the 3 month mark since Ashley's surgery.  What is mind boggling is that if you did not know Ashley had surgery, you would never guess it now.  She is once again back to the vibrant 17-year-old she was before surgery, doing all the things typical for her age and then some.  This chick never stops!  She is completely pain free.

School has been back in for about a month and she's fully submerged in her senior year. She's been voted senior class president and Beta Club president and helps lead weekly Chapel. She also has a full schedule with her youth group involved in ministry and mission work.

Besides having the bending, twisting and lifting restrictions for a bit longer, Ashley is back to full functionality.  She's adapted to using her reacher for things on the floor and she's developed her own little techniques for dressing and so forth. I guess this is the mechanical mind she inherited from her father.  She's all girl, but let me assure you, the workshop is not her weak point.  She is not intimidated by any tool or task requiring a little elbow grease or ingenuity.  Just like her father, she is a "fix it" girl.  It's a joke at our house that when she was way younger and at a friend's house and something would break or not work correctly, she would quickly volunteer their services, "My daddy AND ME can fix it for you."  When she was 11, she was attending a birthday party where the activity was making jewelry.  The mom hosting the party unknowingly did not have the correct tool for some of the tedious tasks of looping the hooks, and so with the snap of a phone call, assuring her dad the party would be a flop without his help, Johnny found himself in the midst of a jewelry-making party!  She knows the names of tools and how to use them that I couldn't begin to even recognize.  About 4 weeks after surgery, she bounced in the den one day and informed us that she wanted to invent a tool for shaving her legs.  Being unable to bend, I had been offering my spa-like services, but Miss Independent surfaced quickly.  True to form, about 30-45 minutes after sharing her plan with her father, they emerge from the workshop with her newest best friend.  She even devised a plan and tool for applying the shaving cream.  Two weeks into school this year, she bounces in and informs us of a new assignment, but she didn't intend to do a poster board of facts.  No, she planned to do a full scale model of Shakespeare's original Globe Theatre.  WHAT A WEEK!!

God has been so good and faithful through this journey, and we just want to thank Him and give Him all the glory.  From the time of her diagnosis, he has orchestrated every detail.  His infinite wisdom is matchless.  We are so very thankful to have been blessed with the opportunity to have a physician such as Dr. Hey. Thankful that we live in a country where access to this type of medical care is available and able to be provided in institutional settings with advancements in care emerging daily. There are some surgeons around the world who only dream of being able to perform surgeries with state of the art centers and equipment as are standard in America today.  May we always be very mindful not to take this for granted.  His mercy and goodness are truly humbling.

As I pulled up the blog last night, I noticed that I had forgotten one of the most important parts of this journey...post procedure photos!  How did I miss that?  So, in closing, I'll leave you with the end result.

Things are really getting busy here gearing up for college applications and other senior events. I'm not sure when I'll be posting another update.  It may be after her recheck at Dr. Hey's in December.  Until then, love and blessings!

Five Weeks Postop

Yes, five weeks have passed since I've posted.  I'm so sorry.  This was not my original intention.  I have had so much I've wanted to share, but time has just not permitted me to sit down and write posts.  I also confess that before surgery, I did not FULLY comprehend the emotions of a parent as they witness their child's suffering.  I knew it was going to be difficult, but I am now convinced there is nothing that can prepare you for the shock of helplessness you feel.  I honestly do not know how folks can go through times like this without relying on God. Emotionally, I was neither able to sit and write about what Ashley was experiencing, nor did I have the desire.  In fact, before surgery, Ashley had made her dad promise that he would document as much of the hospital events as possible on video so she could view them afterwards.  Well, that too never materialized.  We actually tried, but something just seemed incredibly wrong trying to videotape her as therapists tried working with her physically deplete little body.

For the sake of others who have found this blog who are undergoing a similar surgery, or perhaps the same, we do want to document some of the things Ashley has experienced physically over these past 5 weeks

Ashley was finally discharged on Monday, June 4th, one day later than Dr. Hey had originally planned.  Not because anything went awry, but more because Ashley did not satisfactorily complete her therapy until late in the day on Sunday.  This had nothing to do with her back or something surgical but probably more to do with her lingering response to anesthesia and inability to stabilize her system as quickly as some folks.  Everyone differs in this area.  Her nausea, dizziness, and orthostatic issues just took a little longer to start behaving.  Some of this because she pretty much was refusing to eat or drink anything until Sunday late morning when she saw she was not going to be discharged until something changed.  She finally accepted a Boost nutritional shake and then ate a little lunch.  By that afternoon, she was finally able to complete the final phase of her physical and occupational therapy which included training her how to maneuver steps and also how to get in and out of a vehicle, etc.

As far as the ride home, which was about 1-1/2 hours, it went smoother than we had anticipated. The nurse knew what she was doing...she timed it just right with Ashley's medication administration and off we went.  We were very apprehensive when we left the hospital.  Her medications were drastically reduced, but I have to say they knew what they were doing because she had no problems adjusting.  Yes, it was painful, but the medications provided enough relief that she could do her bathroom trips, required walking, and allowed her to sleep for short intervals of time without needing to be turned.  While in the hospital, she wanted to be turned and repositioned no less than every 15-20 minutes, at first it was sometimes even more than this.  The nurses at Duke Raleigh were incredible.  They are so well trained and knowledgeable and deal with these patients on a daily basis.  They have a really great understanding of the medications and how the different types work in conjunction with one another and how to stagger them to give the patient the most benefit.  Ashley found that the IV anti-inflammatory med and the muscle relaxers provided her more relief than the actual heavy narcotics.  Still, the nurses with their extensive experience from the very beginning set up a staggered plan of giving the different types so that she had good coverage.  I cannot say that there were times Ashley was writhing in pain.  If she was, she wasn't letting it show.  I know she had pain, but please don't picture it as not being able to get relief. It would be insane to think that with this type of surgery there is not going to be some real pain, but Ashley will tell you that the suffering she experienced was well worth the end result.  She was and continues to be so incredibly strong and brave.

After getting home, the turning and repositioning was still about every 30 minutes, sometimes every 15 minutes, but after a day, it stretched out to about every 45 minutes to an hour.

As an extra help, we implemented walkie talkie radios. When she wanted to be turned or needed anything, and we were not in her room, she would simply call us on those.  She loved this...still does!!

Don't take it personally if your loved one is very cranky.  That's all I will say about that...I love you Brooke!  I never took it personally.  My mind would just flash back to the hours of waiting to finally see her and the x-ray image Dr. Hey provided us after surgery...2 rods, 22 screws and 13-level fusion.  This was definitely not about me!  I prayed many times over the past weeks that God would allow me to take her place.  Just hearing her murmur under her breath for God to help her and hearing her say, "This too shall pass," and "There will be better days" just about broke my heart.  Actually, I'm certain what I felt was a broken heart, but I can sit here tonight and say that God has been faithful to heal it, just as He has Ashley Brooke's body. Johnny tells people that he is a different man than he was prior to May 31st, and I am certain I know what he means.

One symptom Ashley experienced was muscle cramping of her right upper leg, mostly the outer thigh.  It became so severe, she eventually tried to avoid being rolled to that side.  We asked if this was normal, and were assured it was.  We found that ice packs helped this.  Also, she has diminished sensation to the skin of her upper legs and buttocks.  This too is normal and people recover this sensation at varying degrees of time.  She just stated yesterday that it has improved quite a bit.

Her limitations were and still are that she cannot bend at the waist or twist her torso.  She pretty much needs to go no further forward than a 90-degree angle with her body.  Because of all the muscles and tendons and stuff being cut in the upper part of her back, she had difficulty using her arms and her shoudlers at first, but this is lessening with time.  She has a lifting restriction of 10 pounds.  She still has to have help getting up from a lying position. Walking is extremely important and she tries to walk some every hour.

Each week she has made great strides.  Week 3 brought issues of TMJ (temporomandibular joint disorder) with her jaw locking, probably from a number of factors.  People with TMJ almost always have issues with extended changes in posture and positioning of their head.  Also, she started having ocular migraines for the first time in her life. These could have been triggered by the TMJ.  She's now been headache free for over 2 weeks.  Thank you, Lord!!  There were little things here and there that popped up that we've just had to deal with, but overall her recovery has been very smooth.  It's not something that happens overnight, but I will tell you if you are reading this and are in the midst of recovering from this surgery or have a loved one recovering and are wondering if there are better days...I can assure you, there are!!  This is not to encourage you not to report symptoms to your surgeon.  I'm simply sharing our experiences.  In fact, for about 3 weeks straight, I called our surgeon's office at least once a week with questions.  So, please, don't take this as medical advice because that is not my intent.

For the first 2 weeks she could only sit straight at 90 degrees for about 10 minutes, long enough to eat a meal.  This has gradually increased week by week and by week 4, she pretty much could sit up to her sitting limit of 1 hour.  Week 4 she returned to church but only for the morning service.  Tomorrow, which will be week 5, she is planning to attend Sunday school and service.  Not being able to attend church services and youth events have probably been the things Ashley has missed the most.  For a typical teen, you would think it would be missing out on summer activities of swimming and hanging with friends, but not Ashley.  She has missed church events and her church family more than anything.

God has been so good and so faithful.  These past five weeks have not been without suffering.  Quite honestly, that first week brought a lot of fear and doubt to our minds.  Ashley was so far removed physically from the vibrant, outgoing 17-year-old she had been prior to May 31st, it at times seemed impossible that she would ever be  physically strong again.  During her hospital stay, I had tried to remain in God's word and study, but it seemed as if I were just staring at blank pages.  I really can't explain it fully.  The concentration was not there.  Yet, at the same time, I felt a sense of incredible strength. My emotions felt like they could break down at any moment and just lose it, but my heart and mind were in an agreement that would not allow it.  I knew my daughter needed me to be strong, and I can attest to the fact that God gave me that strength.  It was quite supernatural.

When we returned home, that's when the enemy and my emotions attacked, perhaps because of physical and mental fatigue.  As I would kneel at her bed and try to pray, all I could see were flashbacks of my signing the consent for the surgery.  I was responsible for my daughter's suffering.  Folks, I am no Bible scholar, and my verse memorization should and could be so much stronger, but there were times that without what verses I did know and understand, I may have really lost it.  It was only by God's grace, mercy and His Word that I was able to fight the battle that ensued. The Sunday after we returned home, during what would be our normal church time, Ashley was resting and Johnny was in the den, so I took God's Word and went out on the back deck.  It was a gloriously beautiful day, before this heatwave set in.  My study that morning was John 17.  Of all passages, God brings me to the very prayer of my Savior for Himself, his disciples, and all believers.  There is something about this passage that will quickly bring things into perspective when we face earthly trials that we think are just too much.  Knowing full well the torture and suffering which was about to take place, I was on His mind.  Ashley Brooke Taylor was on His mind. And there it was, in black and white, laid right before my eyes, the verse that literally popped off the page and into my heart, spoken by the Savior Himself, verse 23, "I in them, and You in Me; that they may be made perfect in one, and that the world may know that You have sent Me, and have loved them as You have loved Me.  God loves Ashley just as He loved Christ!

Have you ever read a passage and felt like you were taken to the wood shed yet at the same time, were blessed beyond measure.  That's how I felt that morning. I had been wanting to have my pity party and feel abandoned.  But, God met with me when I needed it the most and gave me just what I needed.  It's not always what we might want.  Our selfishness often times causes us to crave selfish help and sometimes even pull verses out of their intended context and meaning for mere self motivational purposes.  God didn't promise me in His Word that there would be no more suffering or trials and that life would be a bed of roses from here on out.  No, what I got was a good reminder of the suffering and betrayal my Savior endured on my behalf.  I'm so thankful He's blessed me with the life of Ashley Brooke Taylor, and I know that although she will face more trials in this life, she has a very, very promising hope because folks, God LOVES her just as He LOVES Christ!!!  I pray that our lives will daily demonstrate God's love and what He has done for our family. He is SOOO GOOD!

Postop Day 1

GOD HAS BLESSED!  I have to say that first.  Ashley's surgery on Thursday went great and had no complications.  I am sorry for not posting yesterday.  It turned out to be an emotionally exhausting day followed by a physically exhausting night.

All is still going as anticipated with no complications other than the usual painful recovery.

We cannot stress how wonderful God has blessed Ashley by providing the most wonderful surgeon and extended team of caregivers.  The nursing staff at Duke Raleigh Hospital have been awesome! At 7 am when the staff changed out, once again, I commented to Johnny that I cannot believe how blessed we have been with the extremely caring and exceedingly knowledgeable nursing staff.  He sat with tears in his eyes, in agreement.

Folks, please pray today for strength for Ashley.  It will be her first day of therapy.  She has had a rough night with pain, nausea and vomiting, but her team is working diligently with Dr. Hey to find the right combination of meds for her.  She will be required to push through some of the pain today to do her first therapy. We thank you from the depths of our hearts for your prayers and encouragement!  We love you all.

Dr. Hey was in to see Ashley this morning and informed us he had been able to post on his blog about Ashley's surgery.  The following link will tell more about the procedure and shows amazing before and after photos, even 2 on the OR table:  http://drlloydhey.blogspot.com/2012/05/17-yo-ashleys-scheuermanns-kyphosis.html

How great is our God...Sing with me, "How Great Is Our God!"

THE MAN BEHIND THE SCALPEL

Six days and counting...(very deep sigh), so we thought this would be an appropriate time to introduce you to the man behind the scalpel, i.e. Ashley's surgeon, Dr. Lloyd Hey.

As eluded to in the original post, Dr. Hey has endured suffering of his own.  At the age of 16, Dr. Hey was involved in an accident and nearly lost his left leg and his life.  Through his very long recovery, Dr. Hey got to see the good and the bad side of health care. Dr. Hey's website tells the story best, and I encourage you to read his inspiring story.  For all you folks who have an inquisitive or mechanical mind and enjoy fixing things, you will especially enjoy this.

The following is a link to his background https://www.heyclinic.com/about/background.asp

To his philosophy:
https://www.heyclinic.com/about/philosophy.asp

And, here is a link to his Curriculum Vitae https://www.heyclinic.com/about/curriculumvitae.asp

And to top all this...he is a Christian.  Recently I came across an article on Faith In Practice, a blog from Triangle Christian Medical Fellowship.  The article was entitled, "Salt and Light.  A Personal Story of Prayer and Practice by Dr. Lloyd Hey.

http://www.trianglecmf.org/blog/

We have prayed so much for God's guidance in choosing the surgeon he wants to operate on Ashley.  One day this week, I must confess I was having the most difficult time yet in this journey.  That same day, I found this article about Dr. Hey.  Coincidence folks...I think not, in fact, I don't believe in coincidence, but I do believe in God's divine intervention and direction.

When we saw Dr. Hey back on March 26th, he quizzed Ashley on whether she realized there was a woman in the Bible with kyphosis whom Jesus healed.  He told her to research it.  Sure enough, Luke 13:10-13 is exactly that.  We've read it and heard it so many times, but never associated it with this.

What the three of us have learned from this is that it's not God's will to heal Ashley of this deformity short of surgery.  However, God will still be the healer, in and through Dr. Hey.

Thank you God for your faithfulness and the hope and encouragement you provide us through the truth of Your Word.

Good night everyone.  Thank you from the bottom of our hearts for each of your prayers for Ashley Brooke.

SEVEN DAYS AND COUNTING

And the countdown really begins, 7 days.  No more pushing it to the backs of our minds...it's pretty much front and center and unable to be pushed anywhere even in the business of the day.  It's reality.

So, a lot of you are still unclear what's going on with Brooke's back and what is involved with the procedure(sorry, Brooke is her middle name and what I've called her since she was born, that is besides Sunshine.  BTW, she let her preschool teachers know, "Only my Mama calls me Brooke."  So, don't attempt it, she'll set you straight).

So, here's a look firsthand.

Normal lordosis is the two forward curves seen in the neck (cervical spine) and low back (lumbar spine). Normal kyphosis is the two backward curves seen in the chest (thoracic spine) and hip areas (sacral spine). Each of the naturally occurring and normal soft curves serves to distribute mechanical stress incurred as the body is at rest and during movement.

Ashley's Lateral X-rays

Ashley has wedging of the thoracic vertebrae and then the exaggerated lordosis in her lower back.  The film on the left was from 2010 and although it shows the kyphosis, her posture is still normal.  The film on the right is current and her posture is beginning to have a forward pitch.  Her thoracic spine is now literally hanging out further than her behind. Dr. Hey explained, and I have also read on other patient's blogs, that after surgery patient's can suffer a brief issue with imbalance because their center of gravity has changed and the brain has to re-train itself (thankfully, as Dr. Hey explained, the brain is able to do this fairly quickly).

One of many concerns is that Ashley's curve has progressed although she has been skeletally mature

over this time period.

Ashley's fusion will be from T3 to L3, 13 levels, and then she'll have the titanium rods inserted and attached just to secure the spine until the fusion is completely solid.  For the fusion, Dr. Hey will use bone grafts from Ashley's spine where the osteotomies are performed as well as sterile cadaver bone graft. During the procedure her spine will be monitored with what is called evoked potential monitoring for sensory and motor function. 

Well, that's a little more information on what's going to take place or fairly close to it, like I said I'm not sure I want to know every metal instrument detail at this point.

I can't end without leaving an amazingly uplifting and encouraging passage from God's Word

GOD'S PERFECT KNOWLEDGE OF MAN

"O LORD, You have searched me and know me,

You know my sitting down and my rising up;

You understand my thought afar off.

You comprehend my path and my lying down,

And are acquainted with all my ways.

For there is not a word on my tongue,

But behold, O LORD, You know it altogether.

You have hedged me behind and before,

And laid Your hand upon me.

Such knowledge is too wonderful for me;

It is high, I cannot attain it.

Where can I go from Your Spirit?

Or where can I flee from Your presence?

If I ascend into heaven, You are there;

If I make my bed in hell, behold You are there.

If I take the wings of the morning,

And dwell in the uttermost parts of the sea,

Even there, Your hand shall lead me,

And your right hand shall hold me.

If I say, "Surely the darkness shall fall on me,"

Even the night shall be light about me;

Indeed, the darkness shall not hide from You,

But the night shines as the day;

The darkness and the light are both alike to you.

FOR YOU FORMED MY INWARD PARTS;

YOU COVERED ME IN MY MOTHER'S WOMB.

I WILL PRAISE YOU, FOR I AM FEARFULLY AND WONDERFULLY MADE;

MARVELOUS ARE YOUR WORKS,

AND THAT MY SOUL KNOWS VERY WELL.

MY FRAME WAS NOT HIDDEN FROM YOU,

WHEN I WAS MADE IN SECRET,

AND SKILLFULLY WROUGHT IN THE LOWESET PARTS OF THE EARTH.

YOUR EYES SAW MY SUBSTANCE, BEING YET UNFORMED.

AND IN YOUR BOOK THEY ALL WERE WRITTEN,

THE DAYS FASHIONED FOR ME,

WHEN AS YET THERE WERE NONE OF THEM.

How precious also are Your thoughts to me, O God!

How great is the sum of them!

If I should count them, they would be

more in number than the sand;

When I awake, I am still with You.

Oh, that You would slay the wicked, O God!

Depart from me, therefore, you bloodthirsty men.

For they speak against You wickedly;

Your enemies take Your name in vain.

Do I not hate them, O LORD, who hate You?

And do I not loathe those who rise up against you?

I hate them with perfect hatred;

I count them my enemies.

Search me, O God, and know my heart;

Try me, and know my anxieties;

And see if there is any wicked way in me,

And lead me in the way everlasting."

Psalm 139



DILIGENCE AND FOCUS

August 2, 1994 - Our first glimpse of Ashley Brooke

"As you do not know what is the way of the wind,

Or how the bones grow in the womb of her who is with child,

So you do not know the works of God who makes everything."

Ecclesiastes 11:5

Four years ago, we could have chosen to attempt to figure this out all on our own, embarking on a downward spiral of "How" and "Why".  Don't get me wrong, there were times, just as there still are, when we were so weak...days where we wished we could shake one another and wake up from the bad dream.  The enemy stood with a banquet feast ready to serve us a platter of blame and bitterness, convincing us we deserved to feel abandoned by God.

However, there was One greater who held the Truth.  One who stood ready to open His arms wide to us full of sovereignty, hope, love, grace, mercy, and comfort. Only through His grace were we able to grasp hold of His promises of never leaving us.  Only through His strength were we able to apply Proverbs 3:5-6 to our daily lives:  "Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths."

Folks, God is holy and sovereign!  We will never fully understand many of the obstacles in our lives that God allows, but if you are a child of the King, you can rest assured that He is in control and nothing is a surprise to Him!

During trials, stay diligent and focused on Christ.  God's desire is not that you be consumed with the trial but for you to allow Him to consume you!  Ashley's junior class this year had a motto of, "Don't toss your friend under the bus."  Well, in this case, I say don't toss your faith under the bus...throw the enemy's lies and torment directly in its path.  Do not give the enemy the benefit of stealing your focus and thereby any hope of comfort and peace.

Every Journey Has A Beginning Point

As the post title states, every journey has a beginning point, and that's where I suppose we'll start this blog...from the time Ashley's spine first changed, through the diagnosis progress, and up to the present.  First, let me start by stating that I know there is nothing random about Ashley being diagnosed with this disease.  We confess that its purpose is still a mystery to us at the present time, but we will trust God in all of His sovereignty, wisdom, and strength to see us through.  Our desire is that this blog will be less about the disease and more about God's unfailing love and presence even through these difficult days. We fully acknowledge that we cannot rely upon our own understanding or strength to endure this journey.

June 2008 brought a sudden change in the appearance of Ashley's posture and the shape of her thoracic spine.  While playing a board game with a friend, seated Indian-style on the floor, I had my first glimpse of what would weeks later be diagnosed as Scheuermann's kyphosis.  For the first time ever, I noticed an overly pronounced curvature to Ashley's spine, resembling an exaggerated hump.  Ashley had just turned 13.

We promptly scheduled her for her a checkup with her pediatrician.  After his exam, he asked permission to bring in an associate to examine Ashley.  You can imagine the fear I felt as her mother when generally you're blessed to be able to see one pediatrician on a visit, when he returned to Ashley's exam room with two additional physicians.  The consensus was that Ashley needed to see an orthopedic specialist.  At this visit, they gave us no indication of what they thought the problem was.  So, we leave the pediatrician with an appointment to see a local ortho doc in July.

Fast forward to July 3, 2008, our first visit with our local ortho doc.  By this time, we had done our own extensive research on what was going on and were pretty convinced of our findings.  Sure enough, he confirmed our suspicions, Scheuermann's kyphosis.

Explaining Scheuermann's is the simple part. The following is an explanation directly from Dr. Hey's website: (Dr. Hey is the spine specialist we have chosen to follow Ashley over the past 4 years).

Scheuermann's Kyphosis:

Scheuermann's kyphosis is named after the Danish radiologist who first described the condition.

As with postural kyphosis, Scheuermann's kyphosis often becomes apparent during the teen years; however, patients with Scheuermann's kyphosis have a significantly more severe deformity, particularly thin individuals.
Scheuermann's kyphosis usually affects the upper (thoracic) spine. It can also occur in the lower (lumbar) back area. If pain is present, it is usually felt at the apex of the curve.
Activity can aggravate the pain, as can long periods of standing or sitting. Exercise and anti-inflammatory medication can help ease associated discomfort.
When x-rays of patients with kyphosis are examined, the vertebrae and disks will appear normal in those with postural kyphosis, but they will appear irregular and wedge-shaped in those with Scheuermann's kyphosis.

What causes Scheuermann's is another story.  To date, there is no definitive cause for Scheuermann's and it is still widely debated.  These include theories of a sudden growth spurt at puberty in which the posterior portion of the spine grows at a rate more rapid than the anterior, thus causing the hunched- back appearance.  There is also debate on whether there is a hereditary factor involved.

Scheuermann's is less common than scoliosis, and it has been our experience that there is far less documentation from individuals having journeyed this same path.  For that reason, we are documenting our experiences so hopefully other individuals and families can benefit.  Every case is different, so this is by no means to say everyone diagnosed with Scheuermann's will have this exact same course.  Quite the contrary.  In fact, some individuals do not progress very much at all after diagnosis.  Some progress extremely rapidly, sometimes within months of diagnosis.  Others, more gradually over time, as has been the case with Ashley.  Also, all kyphosis is not Scheuermann's kyphosis.

Getting back on track...I apologize, I digressed with the diagnosis and causes.  Our local ortho docs prescribed a regimen of physical therapy which we embarked on.  During the course of the therapy though, we were becoming increasingly concerned because Ashley was complaining of pain from the therapy, and to that point, pain had never been an issue.  We had begun our own search for more information about this disease and had actually begun the process of compiling a list of specialists within the United States who specialize in spinal deformities.  The last therapy session Ashley had, her therapist confided that he was no longer comfortable working with Ashley and that her curve seemed very rigid, and he, too, was aware that Ashley was now complaining of pain whereas in the beginning, she had had no pain.  He suggested we seek the opinion of a specialist in scoliosis and kyphosis deformities.

Our search had already revealed that there was quite a bit more information out about scoliosis than kyphosis.  However, there were a few physician's names who repeatedly received high recommendations for their excellent care on various scoliosis and kyphosis support group boards.

At that time, I was working for a national medical transcription company and provided services for a group of hospitals and physicians' clinics in Missouri (from North Carolina...again, no coincidence here...more like God's divine plan).  My supervisor just so happened to live in Missouri, within driving distance of Barnes Jewish Hospital and one of the top physicians in spinal deformity in the country.  When I mentioned his name, she immediately knew of him and his reputation.  The only problem we had was that we were in NC and he was in Missouri.  She then offered to open her home to us if we wanted to come out and see this doctor for a consultation.  To make a long story short, using her nursing background and research skills, we were actually able to find out about Dr. Lloyd Hey at Duke Raleigh Hospital right here in NC.  She contacted me one day and gave me a link to his website.  What she discovered was that I, too, had found Dr. Hey and found that he was another physician who repeatedly received extremely high recommendations.  Our search yielded a total of only about 4 physicians in the U.S. that we would consider taking Ashley to, based on patient recommendations, education, training, and ONGOING training and research, and Dr. Hey just happens to be within a 1-1/2 hour drive from our home. Dr. Hey's name consistently came up within the same circles in which the esteemed doctor in Missouri did, and still does today.  In fact, Dr. Hey and his surgical team have very recently attended a scoliosis and spine deformity seminar in Missouri.

You know what, I don't think Dr. Hey even knows the rather long story about how we found him.

Okay, I digress again folks, and I do apologize.  This first post will be the longest because it covers a time span of 4 years.

We were able to secure an appointment with Dr. Hey in August 2008.  Dr. Hey is an amazingly talented and God-gifted surgeon, and the best part is, he gives God all the glory and recognition.  It is refreshing to see a medical professional allow God to work through them and in them to radically impact the lives of so many.  His patients have traveled to him from all across the U.S., as well as other countries.

Here is a link to his life story, credentials, and patient blog:  https://www.heyclinic.com/index.asp.  Dr. Hey regularly blogs on patient's surgeries and outcomes.  Look for the link on his website to his "Spine Blog."

To make a long story short, Ashley has been followed by Dr. Hey for the past 4 years, at first twice a year, and then yearly.  This past March we returned for a recheck and found that even though Ashley has been skeletally mature for some time, her kyphosis has advanced.  She is now approaching 75 degrees.  More than that, she is now having discomfort with exercise, sitting and standing for prolonged periods of time, and having pain in her neck/shoulders and lower back.  Like many other kyphosis patients, their lower back develops an exaggerated lordosis in response to the kyphosis.  This has also progressed to 82 degrees.  She is also developing a forward pitch with her pelvis and a rounding of her chest down onto her abdomen, which is more prominent in certain clothing, and this is causing her to be more self conscious about her appearance.

We discussed our options with Dr. Hey.  He placed her on a program of core strengthening exercises, a back brace, and anti-inflammatories as a temporary measure.  However, for the long term, there is no solution outside of surgery.  In fact, allowing it to continually progress can cause further complications and possibly hinder the level of correction.  Surgery is pretty much a matter of when, not if, at this point, especially now that she is developing symptoms which are what generally lead these patients to seek surgical correction.

Ashley's desire is to pursue a career in nursing and to also use her nursing skills in missionary endeavors.  After prayerfully seeking God's guidance, we have scheduled her surgery for May 31, 2012, with Dr. Hey at Duke Raleigh Hospital.  Knowing the commitment required for her education and training and the rigors and physical demands of a nursing a career, Ashley desires to have this surgery between her junior and senior high school years to allow adequate recovery and strengthening before embarking on God's calling for her life.

So, family, friends, and church family, we are asking and desirous of your prayers for Ashley, Johnny and I over the coming weeks and months.  Not only for us, but for Dr. Hey and his extended team of care providers as well.  We know that God has allowed this trial to enter our lives, and we will look to Him for guidance and strength.

I'll be updating from time to time as things develop.  I think I've given you a good background on where we are at this point.  I realize now that I should have began this back 4 years ago.