April 14, 2020

Well, it's been many, many months and many, many hours of trying but unfortunately without success.  The insurance will not grant us the documentation needed to move forward.  So for now, we will do nothing.  We will just go on with life and pray that doors will open in the years to come.  We are so grateful for the love and support we've received all along the way.

October 8, 2019

...the insurance battle continues...

We've been fighting with the insurance for a year now.  The doctor's office warned us that getting insurance on board would be a chore and it definitely has been.  We've jumped through their hoops with very slow progress.  In March they granted us what is called a Gap Exception which allows us to see our out-of-network doctor.  They gave us until July 1, 2019 to have the surgery complete but that was an unreasonable timeline (because she needed a surgery in preparation for this surgery & we are missing a document) so we filed for an extension to December 31, 2019, which was eventually granted.  The original plan was that she would have surgery (in LA) in September but clearly that has come and gone without surgery. 

We get asked all of the time where we're at...so, here's the scoop...

We have everything we need to move forward but one single document called a Letter of Agreement.  Without that document we will be "balance billed" for the procedure - meaning whatever the insurance decides not to cover will come out of our pocket.  For example, if the insurance decides they will only pay $5,000 we will be left with any balance above and beyond that, aside from the very large sum of money we will pay upfront - potentially leaving us bankrupt.  So...we wait for said document. 

We've been fighting for this document for many months now.  After a lot of headache we were granted a Case Manager through the insurance company, which made a world of difference.  Lacey has been wonderful to work with and to put up with my almost non-stop phone calls - hey, the squeaky wheel gets the grease.  We talk frequently and have developed a very positive relationship and we are very grateful for her advocating on our behalf.  With the end of the year fast approaching and the surgeon having very limited dates available, I have done my best to keep our case at the top of their pile.  Poor Lacey is just stuck in the middle, but oh man am I grateful for her.

Long story short...for the last several weeks this document has been "pending".  Today we got word that our request has been DENIED.

So what does that mean?!

1.  No, Kambri will not be having surgery before the end of the year.
2.  No, we don't know if or when we will be able to move forward.
3.  Yes, we will need to again file for an extension into next year.
4.  Yes, we will file a member grievance and see where that road takes us.  We're not giving up yet.

We don't know when or how (or even what) the future holds but we're doing our best to hold on, be patient and remember that God has a plan.

Wednesday, June 5, 2019

The updates have been few and far between but the process continues on.  Since our time in Chicago last August, we have been fighting to take the next leap with Dr. Lewin - but let’s back up for a minute first.

Kambri’s journey has been a long one.  We had to fight to get her here - we hoped for many, many months that she would come before she ever did.  Then during my pregnancy we grew concerned because she would “shiver”.  We researched seizures in the womb & talked to our doctor about what could be wrong.  I believe that this was a tender mercy that would prepare us when something was “wrong” with our little girl at birth.  That was 10 years ago just this week and oh, what a journey it has been.  

I don’t know how many hundreds of hours we’ve spent in a hospital, or how many doctors & speech therapists we’ve seen, or how many thousands of miles we’ve traveled or how much money we’ve spent but I do know that it has been A LOT but I also know that we wouldn’t change a thing.  

In 2016 we took a huge leap of faith and attempted to fix her “Nubin”.  We knew the risks going in.  We knew it wouldn’t be perfect but we hoped that it would work.  Time proved that it was unsuccessful.   The year that followed those surgeries proved to be one of the very hardest.  How could we have prayed & felt so good about something, all for not?!  How could we have put our daughter through hell for seemingly nothing?  How could we have spent our life savings, only to need a revision anyway?  I beat myself up.  A few unkind comments from others (about the things I was already trying to work through myself) tore at my heart.  When Kambri questioned why, I had no answers to give.  While I try to make this blog a positive one, it is about the journey and this journey includes some pain & it has never been easy.  That year rocked our world but I’m here to tell you that God has a plan.  

Fast forward...July 2018.  There was a conference in Chicago...we couldn’t decide whether or not to go...we needed to fork out another $4000 for a 4 day trip...would it be worth it?!  I prayed that it would & booked our flights.  We met so many parents & children on this same journey.  I met one mom in particular who had walked an almost identical path.  I shared my feelings of failure with her. She looked me in the eye and said something to the affect of “you did not make any mistakes with Kambri.  You did every ounce of research you could and you made a decision based on the information & knowledge you had at that time.  Now you get to move forward as you gain more information & knowledge but you never failed”.  Her words healed my heart.  

We met a panel of doctors and got new opinions & information.  One of those doctors was Dr. Lewin.  We were drawn to her when we met her, and she to us.  The conference proved to be worth every dime.

We came home and got to work.  They warned us that getting insurance to approve this process would be  a chore.  We’ve jumped through hoops & had an attorney help us get our ducks in a row.  After several months our insurance granted us what is called a Gap Exception.  That was in March - they gave us until July 1st to have the surgeries completed which was an unreasonable timeline so back the drawing board we went.  After more paperwork & phone calls, we were excited when they granted an extension until December 31, 2019 which allows us to move forward! 

One of the doctors we met in Chicago was Dr. Kesser (from Georgia), one of the top Otolaryngologists in the country.  I don’t think that it was by chance that he knows Dr. Shelton, our Otolaryngologist in Salt Lake personally. When we reached out to him (Dr. Kesser) about closing the ear canal, we laughed as they were at a conference together that very weekend, and he confirmed that he had every confidence in Dr. Shelton’s ability, ultimately saving us thousands in travel expenses.  We are so grateful.  We met with Dr. Shelton & his resident doctor yesterday, who just so happens to be heading to do his fellowship with Dr. Kesser.  Small world. 

So here we are....today is the day.  We got up bright and early to head to the University of Utah for yet another surgery.  She’s a champ but that doesn’t mean this ever gets easier.  It’s hard for her.  It’s hard for us.  It’s hard for her brothers.  It’s stretching all of us but we’re grateful for the lessons we’re learning.  

We had to check in at 7:45 this morning.  We’re always grateful for early surgery times because fasting can be half the battle. 

Today’s goal: close the ear canal in preparation for surgery with Dr. Lewin. 

She’s a seasoned champ in the OR.  She talks about anesthesia like it’s old news and knows exactly what requests to make.  


At 9:12 am they wheeled her away.  She got to choose her favorite song to have playing when they went in.  First she chose Chris Ledoux (that a girl!) but then switched last minute to P!nk’s “Walk Me Home”.  I’m grateful for good doctors and nurses who take good care of her! 

Then he and I wait.  Waiting is the worst part.  It was 4 hours this time.  Time seems to crawl in the waiting room. 


We’re always grateful when they take us back to recovery to be with our girl.  She’s usually pretty quiet after surgery and today was no different but she did tell  Jared he had a unibrow and that I look like a purple unicorn.  When Jared told her surgery was successful & that they had attached her big toe to her ear, her little eyes welled up with big alligator tears.  She wasn’t ready for teasing.  

Once she was stable and alert they moved us to recovery & we were able to get out of there pretty quickly.  Today’s recovery was pleasant, that’s not always the case.  




Homeward bound! 

She requested a pit stop at Zupas on our way out.  We’ve trained her well ;). 



So...what comes next?!  In the coming months we will head to LA for a 3D scan of her good ear.  Dr. Lewin will then flop it and create a “mold”.  In September (most likely) we will head to LA for three weeks (if you have any hookups of a great place to stay give me a holler) at which time we will remove the ear we implanted and implant the new ear.  Good things are to come! 

Side note: she got clearance to get her ear wet in April.  It hadn’t been wet since January of 2016.  And now today she is back on a water restriction.  It was fun while it lasted. 😜

The messages flooded in today, thank you friends for thinking of us!  We are so grateful. 💕

Official Conference Photos

October 3, 2018

We've decided to pursue the Porous Implant option with Dr. Lewin.  We've had a few phone appointments with her and her staff since our trip to Chicago to get the ball rolling.  This whole process is complicated.  Our first goal is to prove to our insurance that her reconstruction was unsuccessful and that revision is necessary.  We need them to grant us a Gap Exception in order to afford this as a surgical option.  We've submitted the following letter to an attorney (who specializes in this) for review and then we will submit it to the insurance company and cross our fingers.  It is almost guaranteed that the insurance will deny us (no insurance company willingly covers things like this), at which time we will appeal it as many times as needed.  It could be a long process but we are up for the challenge.

What is Porous Implant Ear Reconstruction "PIER"?  A porous polyethylene material that is hand-carved and implanted to give the ear a more realistic appearance.

September 25, 2018

To Whom It May Concern:

                                                                          

Hello! We are writing this letter in hopes of getting approval for a Gap exception and we wanted to share our story with you as you consider our request.

In June of 2009 our daughter Kambri was born without an ear unexpectedly.  When the doctor held her up so we could see her sweet face, we first noticed the large skin tag on her cheek and then said, "her ear is folded over" just as we realized that there was actually no ear but just a little formation of skin which we later lovingly nicknamed her nubin.  The next few days held a whirlwind of events.  Doctors, specialists & test after test consumed us.  During this time we learned the official title of her diagnosis: Microtia (deformity of the outer ear) Atresia (absence of the ear canal).  The next several years proved to be a learning curve as no one seemed to be very familiar with her diagnosis.

She was a very fussy & stiff baby.  When she was 2 1/2 months old, we thought that the eardrum in her good ear had ruptured.  The doctor insisted that because she only had one ear that we do surgery because this ear needed to function to the best of its ability.  So on August 19, 2009 she had her first surgery.  When the doctor got in there he was in awe at what he found.  The ear drum hadn't ruptured but there was "drainage that had thickened" and he removed almost a foot of nasty gunk from her ear.  The pressure from the buildup had made her miserable and she was a different baby immediately after surgery.  The constant tears nearly ceased & she started to smile.  She relaxed and was no longer stiff.  We were able to rule out almost all of our other concerns shortly after. 

Just a short time later she went under anesthesia for the second time, this time for an ABR (Auditory Brainstem Response) test.  The test proved that she does have an auditory nerve which meant that she could potentially gain some hearing and we were thrilled.  These results led us to Primary Children's Hospital where we met with Dr. Muntz for the very first time.  We learned a little bit more about Microtia-Atresia & what our options were.  He introduced us to the possibility of surgeries but told us we just needed to let her grow up first as they can't do anything before the age of 5.  He sent us to an Ophthalmologist, a Dentist and an Occupational Therapist.  The Ophthalmologist confirmed that her eyes were developed & functioning normally.  The dentist confirmed that she did have teeth, although they didn't come in until she was 14 months old.  With the whole right side of her face being affected, her little tongue hung out of her mouth all the time so the Occupational Therapist worked with her to gain muscle control so she could learn to eat & eventually speak.

We did as the doctor ordered and let her grow up...but not without a heck of a lot of intervention.  Over the years we've learned the in's and out's of unilateral hearing loss and a whole lot of life lessons.  She started speech therapy at 3 months old and finished at the age of 6.  She didn't make her first noise (other than crying) until she was almost 7 months old.  We had been working with her for months to help her realize that she had a voice and how to use it.  Once she found her voice she let it ring loud and clear.  

On January 21, 2010 (7 months) she was fitted with her first trial Baha - a bone conduction hearing aid.  Every doctor seemed to have a different opinion on whether or not it was necessary & if it would help her.  With a price tag of $5000 and insurance refusing to cover any of it, we weren't sure what we should do so we started with a trial to see what we thought.  We noticed almost immediately that she was able to locate sound which she had never been able to do before. Still with many unknowns Jared and I finally decided that we never wanted to look back and say "we wish we would have" so we decided to purchase one of our own. 

Kambri started school at Sound Beginnings when she was just 18 months old.  We were blessed with incredible teachers & staff and an opportunity to rub shoulders with many amazing families who were also dealing with hearing loss.  Kambri made leaps and bounds of progress during her time at Sound Beginnings. In May of 2013 she graduated from Sound Beginnings!  She was ready to be mainstreamed into a regular classroom and we were so excited! 

Her first 6 years brought hundreds of appointments.  She's been poked, prodded and examined a million times. I don't know how many hearing tests she's had but it feels like thousands.  She's become well acquainted with the sound booth.

In August of 2013 she had a CT Scan.  With it came with devastating news.  In my journal after we were given the results I wrote, "I watched intently as they did the scan last week and had my own ideas of what was in store.  I told Jared that I thought she had all the parts but I also thought it was possibly deformed.  I was anxious to see the official results.  For whatever reason I was shocked when he confirmed my ideas.  I guess I secretly hoped that it would be different.  He confirmed that the structure of the inner ear is fairly normal, however, it is surrounded by bone which means that we will never be able to restore hearing.  My heart literally sank.  Tough words to hear.  I held back the tears and squeezed Jared's hand just a little tighter.  He showed us the scan and pointed out specific things.  He showed us a diagram of a normal ear and compared it to her abnormalities.  He sat with us and answered our questions.  We explained it to Kambri who cried and said, "I just want a hole like my other ear".  Talk about heart wrenching.  We will be scheduling an appointment with a physician at Primary Children's Hospital to discuss what this means for our future.” 

It was then that we decided that if it wouldn't function, there was no reason to pursue reconstruction and for a time we thought the door was closed...

After going through a range of emotions once again we finally decided to implant the Baha (hearing aid) into her skull permanently in order to get rid of the headband.  The surgery was scheduled and we went to the ENT for our pre-op appointment.  When we walked into the office that day the doctor acted as if he had never seen us before.  He started explaining what a Baha is and what our options were, as if he didn't have a clue who we were.  I was stumped.  We had been seeing him for years and suddenly he knew nothing about us.  He stumbled all over himself when I pointed out that she had been a patient since birth and that surgery was scheduled in just a few days.  I was mad.  How could he forget us or at the very least not read his notes?!  I couldn't trust him to do surgery on my baby girl when he didn't seem to care.  We cancelled the surgery and walked out of that appointment.  We decided to go to a different doctor in hopes of starting the process all over again.  This doctor answered many of our questions and then he said, "I will do whatever you want me to do, but I will not do anything until you know all of your options and can make an educated decision" and with that he sent us back to Dr. Muntz at Primary Children's Hospital.  

So in June of 2015 we headed back to Primary Children's Hospital for a couple of appointments.  Our first appointment was with Dr. Harlan Muntz, a pediatric Otolayngologist, the same doctor we had met with when she was a baby.   He told us that it was a good thing that we hadn't implanted the Baha because that would make reconstruction extremely difficult because of the scar tissue.  He reassured us that there are absolutely things that can be done to restore hearing.  He explained all of our options.  Next stop was a hearing test at University of Utah Hospital followed by an appointment with Dr. Clough Shelton, also an Otolaryngologist.  He is the one who would make the ear canal & functioning ear drum.  He suggested that she would not need the Baha any longer as he can restore hearing in the 30's which is just below normal.  And with that, we were sent home to make a decision.  Over the next few months, together Jared, Kambri and I decided that if the ear would function, reconstruction would be worth it so we went ahead and scheduled the surgeries.

In December we had another appointment with Dr. Muntz.  He spent about 45 minutes with us answering all of our questions, easing our concerns, and even drawing pictures in the simplest of terms to help us understand every detail.  He showed us pictures of past patients and helped us to feel confident in our decision.  He explained the process of each of the 5 necessary surgeries and what we should expect. 

Her first surgery to reconstruct the ear was on January 5, 2016.  She had 6 surgeries that year with the last one on December 28, 2016.  It was a year of sleepless nights, countless doctor visits, many miles back and forth to Primary's, many tears, pain meds & barf bags.  She was a trooper but it did a number on all of us.

We've had several doctor appointments since then.  The healing process has been long so we've just been taking things a day at a time and trying to live life as normal as possible.  A few months ago we had an appointment at the University of Utah hospital and walked away with some tough news.  None of the information was shocking or unexpected yet it was still hard to hear.  The purpose of this whole process was to restore hearing and that was unsuccessful.  It's frustrating and heart breaking.  Several surgeries, appointments and follow-ups not to mention the thousands of dollars we've spent was all for not.   The inner ear refuses to heal.  Dr. Shelton compared it to trying to do a skin graft in the mouth - it's too moist to heal.  We've tried everything from creams & antibiotics to expanding ear plugs to cauterization & everything in between yet the ear canal continues to get smaller and smaller at every appointment.  After 15 months (post surgery) we concluded that it's probably not going to heal in the way we had hoped.   We don't love the way the ear looks & the placement of it but even more so we are disappointed that she still can't hear.

So once again we started to explore our options.  We met with new doctors, explored different procedures & even took a trip to Chicago to attend a conference for Microtia-Atresia patients, which is where we met Dr. Lewin.  We were able to meet with her individually, meet patients who had worked with her and were able to see (& feel) her work on actual patients.  We met with Dr. Bonilla (from Texas) who specializes in the rib graft surgeries (which is what she had done) and he told us that she is not a good candidate for the operation again.  He would not consider doing surgery and recommended us to Dr. Lewin.

We feel like Kambri is a good candidate for surgery with Dr. Lewin because we have explored all of our options.  We have researched countless options and we feel like this is the best fit for our situation.  Please consider granting us the Gap Exception so that we can move forward and offer Kambri all that she deserves. 

THANK YOU for your consideration!

Jared, Stephanie and Kambri Strawn

Sunday, August 5, 2018: Chicago Day 4

Kambri has a legit phobia of birds.  It started when she was tiny.  I kept thinking she would grow out of it but she hasn't yet.  The birds in the city are very brave and do not hesitate for one second to swoop right in.  It's both sad and hilarious to watch and since we're good parents...we take pictures.

We spent our last day exploring Navy Pier and it did not disappoint!

The Ferris Wheel was one of the things on the girls bucket list so we had to make it happen.  It is 264 tall and was created to rival the spectacle of the Eiffel Tower.  The views of the city were spectacular!

A trip down the river...

...and a pit stop at the candy store...

...before it was time to head back to the airport to head home.

It was a quick trip but proved to be a great time!

Saturday, August 4, 2018: Chicago Day 3

The girls spent the whole day at kids camp and had an absolute blast!  They were all smiles.

Jared and I spent the day at the conference listening to physician lectures, parent panels, visiting vendors, and learning new things! 

Side note: In the middle of the day I got a text from my credit card company that we had made a large purchase at Target in Chicago.  A moment later...another large purchase.  Now I would've loved to be making those large purchases but seeing how we were both sitting in a class we knew it wasn't us so Jared had to sneak out to go take care of it.  Turns out that our card was stolen at dinner last night and someone had taken themselves on a little shopping spree to Target, McDonald's, Subway, and Marshall's before we realized it.  We were able to shut it down which was great but that left us with only a debit card (that we were afraid to use) & a little cash.  It can be tricky to prove that there are fraudulent charges when you have been making purchases in the very same city that it is currently being used.  It was a huge hassle but things worked out just fine.  Never a dull moment when traveling with the Strawn's - oh the stories we have to tell ;).

The conference was great.  We ruled out a few reconstruction options and are now exploring some things we hadn't considered before.  We don't know what the future holds for our little lady but perhaps we're one step closer or at least headed in the right direction.  We didn't walk away with any profound answers of what comes next but the conference was worth it because it gave us a little bit of direction and knowledge and we all know that knowledge is power! 

As I spoke with one of the women in attendance, I expressed my feelings of frustration as we felt so good about our decision and it was all for not.  Her response was something along the lines of "you made a decision based on what you knew at the time, now you know more so you can make a more educated decision."  Yes!  Bless her for saying that.  We did make our initial decision after much research and prayer.  We made the decision based on what we knew and now we know more because we were forced to know more.  I was grateful for her perspective and reminder that, then and now, we have Kambri's best interest in mind and will go to the ends of the earth to do what is best for her.  This is all part of her journey and we are grateful for the opportunity to grow!

The girls opted for an evening in the pool and a few rounds of Cover Your Assets.  It cost $1000 a day to be in the city and the pool was their very favorite part :).

Friday, August 3, 2018: Chicago Day 2

We had the whole morning to explore the city so we took our time as we made our way to the hotel where the conference was held.

At the top of the girls must-see list was the American Girl doll store.  They were in little girl heaven.  They wandered the entire store admiring every last detail and dreaming big dreams!

We also hit the Lego store, another highlight for them.

The city is fascinating!

We had the opportunity to listen to a physicians lecture and then met individually with 4 different doctors in the afternoon.

*Dr. Russell R. Reid (Professor of Surgery, Director of Craniofacial Surgery University of Chicago - specializes in mandibular distraction (aka jaw reconstruction)) - We are unsure if Kambri will need to have jaw surgery as she gets older.  The joint in her jaw is significantly smaller & deformed on that side but it seems to be keeping up thus far.  This is something that time will tell so we just have to wait.  They don't recommend doing anything until she is done growing.

*Dr. Arturo Bonilla (Pediatric Otolaryngology Head & Neck Surgeon in San Antonio, TX - specializes in Rib Graft Reconstruction) - His recommendation was to NOT try the Rib Graft Reconstruction a second time.  He said that it would be difficult to get different results with what has been done previously.

*Dr. Sheryl Lewin (Craniofacial and Pediatric Plastic Surgeon, specializes in Porous Implant Ear Reconstruction (“PIER”) Los Angeles, CA) - We were very impressed with her & with her work.  Her (patient) ears look fantastic! She thinks Kambri is a great candidate for the Pourous Implant.  It is a bit more risky because of what has been done previously.  The ear will not function.  She recommended that we close the ear canal.  She would implant the Baha at the time of surgery.

*Dr. Bradley Kesser (Otolaryngologist - Head and Neck Surgery University of Virginia School of Medicine, specializes in Atresia Repair) - He suggested that based on her CT Scan results, he probably wouldn't have attempted the inner ear.  He referred us to one of the top doctors in the nation...Dr. Shelton - our doctor who did the inner ear surgery. :)  The good news about that is it confirmed that her inner ear is just difficult and that our doctor was very knowledgeable in what he was doing.  Dr. Kesser recommended that we close the ear canal if it will not function because they often cause many unnecessary problems.

It was so convenient to meet face to face with some of the top doctors in the nation in one place.  We walked away humbled and so grateful.

We had some time between our appointments and the Meet & Greet so we made our way back to the American Girl store.  We surprised the girls and let them choose anything they wanted.  Kambri chose Tenney (she's been dreaming of an American Girl doll forever!) and Ellie chose a puppy with some accessories.  They were so surprised and so excited!

Next stop...dinner at The Cheesecake Factory.

Then off to the conference!

They had a little meet & greet so we could meet other families and mingle with the doctors & staff.  You can never go wrong with ice cream & balloon animals.  It was so good to rub shoulders with people in all stages of the game.  I love connecting with people who know exactly how we feel, who have the same questions & concerns that we have, and have the same desires to do what is best for their child.

Tomorrow is the big day and we can't wait to see what's in store!