Friday, April 13, 2018

Friday, April 13, 2018

Earlier this week we had an appointment with a doctor in Boise who does ear revision surgery.  It was a unique appointment as we met via FaceTime instead of in the office face to face.  Dr. Griffiths gave us many things to think about and we plan to meet him in person in the coming months.  We are still exploring some other options so we're not quite ready to jump on that bandwagon just yet.  We don't know what the future holds and we are being very cautious with our decisions.

This morning we had an appointment with the audiologist to have her Baha reprogrammed and to have her fitted with a new band.  She's always been a champ about wearing her Baha (when she was little she called it her Haba) but now that she's had a little break & she is getting older and more aware, she's having a harder time with it this time around but she's being a good sport about it.  Hopefully it will help enough that she'll learn to love it again.
The band is a new style and fits on the back of the head instead of the regular headband, we're hoping she'll like that better, especially since there is no velcro to pull her hair.

She needs to wear the Baha because a) it helps her to hear and b) it stimulates the nerve so that if and when they do open the canal (again!) it will function.  There is a noticeable difference in her hearing when she wears it and when she doesn't.  She has a hard time localizing sound and filtering sound with background noise without it.  We are proud of her for taking things in stride and just rolling with the punches.

For the most part she is confident and so great about all of this but there are also moments that she is very tender and her emotions are close to the surface.  This week has been a hard week for her.  It breaks our hearts to watch the tears fall from her eyes.  The good news is that she is getting old enough & understands enough that she is very much part of the decision making.  We've always included her in our decisions about her ear but she is now very aware of the things we are discussing and able to have a more educated opinion.  This process has been very hard on her but we are very proud of who she is because of it!

Thursday, March 15, 2018


It's been over a year since our last update.  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.  Last week we had yet another appointment at U of U 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 followups 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 we've concluded that it's probably not going to heal in the way we had hoped so the doctor gave us three options:
1. Re-do the surgery of the inner ear.  50/50 chance that we would see different results.  (I would happily go this route but I worry that if it doesn't heal again then we've created more scar tissue making it more difficult for any changes in the future)
2. Surgically implant the Baha (hearing aid) to give some hearing and go on with life as usual. (The very same surgery that we planned to do before we started this whole process - a step backwards)
3. Do nothing and wait for technology to continue to develop. (a high percentage of children with unilateral hearing loss have to repeat a grade because they miss a lot of what is said because they have a hard time filtering background noise, often they are concentrating so hard on hearing the sounds that they miss the actual lesson the teacher is giving)

Dr. Shelton has asked that we keep the ear dry for another year.  She was as disappointed about that as she was to know that this whole process didn't accomplish what we had hoped.  That will make 3 years of no water in the ear - it's more inconvenient than anything but it's getting old.

A hearing test confirmed that she still has severe hearing loss on that side.

Dr. Preston (our audiologist) is attempting to make an ear plug that she can wear underneath her swim cap so she can swim this summer without her paranoid mother following her around adjusting it every 5 seconds.  The tricky part is that it can't go in the ear canal and that's what keeps it in place.  We're crossing our fingers that it will work.

We are in the process of connecting with an ear surgeon who does revision surgery of the ear.  We could possibly remove this ear and start all over again and pray for different results.  There is a conference in Chicago (for parents & children with Microtia-Atresia) in August that we are considering attending before we make any final decisions as to what comes next.

We don't love the way the ear looks but even more so we are disappointed that she still can't hear but that doesn't necessarily mean that we regret this process.  We've learned so many things and grown insurmountably.  We love our doctors and don't regret for one second who we chose as her surgeons.  We trusted them and they did what they are well qualified to do, sometimes things just don't go as planned, no matter how prepared or qualified we are.  We wish our results were different, we would've been thrilled if it would've gone exactly as we envisioned but apparently God has more for us to learn.

My heart is full as I watch Kambri face disappointment with confidence.  We don't know what the future holds.  We will make some big decisions in the coming months.  We are proud of who she is becoming & we love watching her blossom into a beautiful young woman with a story that will inspire many for years to come.  She is a rockstar!

Thursday, February 23, 2017

Thursday, February 23, 2017

We went back to U of U to see Dr. Shelton today.  Jared couldn't make it so Grandpa & Grandma Strawn went down with us.  The good news: SHE DOES HAVE SOME HEARING!  We are hopeful that it will continue to improve with time.  The bad news:  It was about 10 points below what the doctor was hoping to see.  They cleaned out a bunch of gunk which has made it very sensitive and sore.  She was hoping to get clearance to go swimming but he advised 3 more months of no water.  We've mastered the art of washing hair without getting the ear wet.  Maybe we can add that to our resumes.

Monday, January 23, 2017

From "nubin" to outer ear; a little girl's year of transformation

From "nubin" to outer ear; a little girl's year of transformation
Written By: Jennifer Christensen - Cache Valley Daily 
Posted: January 23, 2017
Kambri Strawn is seven years old. Throughout her young life, this courageous little girl from Wellsville has endured countless appointments with doctors and specialized service providers in an effort to restore hearing in her right ear and construct an outer ear. She has also had multiple surgeries, the most recent being Dec. 28, 2016.
Born June 3, 2009 to Stephanie and Jared Strawn, Kambri was born with microtia-atresia, which is the underdevelopment of the external ear and the absence or closure of the external auditory ear canal. While Kambri’s left ear formed properly in utero, her right ear did not fully develop.  Shortly after Kambri’s birth, her family lovingly nicknamed the small formation of skin marking the incomplete formation of her right ear a “nubin.”
“Initially, we were shocked and surprised with her diagnosis, and there was a whole range of emotions that came with it,” said Kambri’s mother, Stephanie Strawn.  “We went from being excited and thinking, ‘this is gonna be ok,’ to where we would cry and say, ‘what are we gonna do?’ But eventually, we came to terms with it, and we’ve grown to love who she is with a nubin.”
Unfortunately, Kambri’s infancy was characterized by pain. Constant crying, arching of her back and stiffness throughout her tiny body led the Strawns to believe that their daughter’s condition extended beyond microtia-atresia. Seeking the advice of multiple specialists, they dedicated themselves to ruling out more serious conditions.
When Kambri was 2 ½ months old, Stephanie and Jared worried that the eardrum in her “good ear” had burst.  On August 9, 2009, Kambri had her first of many surgeries to explore what might be happening. Instead of finding a burst eardrum, Kambri’s doctor discovered a significant impaction in her ear canal. Once it was removed and the pressure it caused was relieved, Stephanie describes her daughter as a “different baby.”
“The constant tears nearly ceased and she started to smile,” Stephanie recorded on the blog, "Redefining Perfect," she created to record Kambri’s journey.  “She relaxed and was no longer stiff.  We were able to rule out almost all of our concerns shortly after.”
As they learned more about their daughter’s condition, Kambri’s parents debated how best to approach it. Having learned shortly after her birth that surgical intervention would have to wait until Kambri was five, Stephanie and Jared determined that they’d simply give their baby the best life possible.
“The best advice we were ever given came from a doctor,” wrote Stephanie, “His advice was, ‘if you don't want her to be self-conscious, then you don't be.’  We took that to heart and it changed everything for this little girl.”
The Strawns did, however, explore every option to optimize the hearing in Kambri’s left ear and facilitate normal speech development. Kambri began speech therapy at just three months old, she was fitted with a bone-conducting hearing aid at seven months and she was enrolled in Utah State University’s Sound Beginnings program as a toddler.
“We were blessed with incredible teachers and staff and an opportunity to rub shoulders with many amazing families who were also dealing with hearing loss,” said Stephanie. “Kambri made leaps and bounds of progress during her time at Sound Beginnings. It was amazing and we are forever grateful.”   
The Strawns traveled to Primary Children’s Medical Center (PCMC) in Salt Lake City many times over the next several years, but their appointment on Jan. 5, 2016 was different.  This day marked the first of a series of six surgeries Kambri would have during the next year.
Progressively over the next 12 months, Dr. Harlan Muntz,  Kambri’s, ENT-otolaryngologist at PCMC, performed five surgeries to construct an outer ear, using cartilage from her ribcage to form its shape and skin grafts from her stomach and thighs to cover the cartilage. Slowly, her new right ear began to match her left ear more closely.
Kambri’s sixth surgery, which took place at the University of Utah Medical Center on Dec. 28, was undertaken as a means to reconstruct her inner ear to restore hearing. Performing an intricate 4 ½ hour operation that was more complicated than originally expected, Kambri’s surgeon, Dr. Clough Shelton, drilled through her skull to create an ear canal, using a skin graft from her right hip to cover the inside of the canal. He also implanted a prosthetic ossicle (middle ear bone) and fashioned an eardrum using sinew taken from above her ear. The ear was then filled with a protective bolster to keep the ear canal open.
Kambri returned for a post-op visit with Dr. Shelton on Jan. 5, to have the bulk of bolster removed, and the remainder of this surgical packing will gradually dissolve. Although an official hearing test won’t be conducted for three months, Kambri reports that she has a limited amount of hearing in her right ear, and Dr. Shelton has expressed confidence that her hearing will gradually improve over time.
Surprisingly, completion of the surgical construction of Kambri’s right ear has been bittersweet for her family. Shortly after her final procedure, Kambri expressed to her mother that she missed her nubin, and Stephanie has similar sentiments.
“It was an adjustment for us to accept the nubin,” said Stephanie, “and now it’s going to be an adjustment for us to accept the ear.  I don’t know for sure why, but it’s been a harder transition than I imagined.”
What’s ahead for Kambri? Stephanie’s greatest hope is that her daughter can simply live a normal life. She and Jared have promised their daughter a full year off from having additional surgery, and she shouldn’t need more invasive intervention until well into adolescence.

“It’s been a long, hard year and we’ve struggled,” said Stephanie, “but we’ve also gained a lot this year. We’ve learned a lot, we’ve really pulled together and Kambri has blossomed. This is a story not only of the transformation of an ear, but also one of a beautiful little girl who has conquered hard things. It's been a year of sleepless nights, countless doctor visits and many miles back and forth to Primary's. There have been many tears, pain meds and barf bags— but it has also been a year of growth, courage, service and gratitude!” 

Friday, January 20, 2017

January 20, 2017

On Sunday I noticed that Kambri was playing with her ear.  I asked if she could hear to which she replied, "it sounds like waves", then she pulled my head right next to hers and asked, "can you hear it?".

There hasn't been much of a noticeable difference with hearing yet, other than the "waves".  We have noticed a sensitivity in that ear that hasn't been there before.  I think she is starting to gain feeling to the inner ear which seems to be irritating to her.  The cold air seems to bother it.  It's a big adjustment for her little body.  She has bounced back to her happy little self and continues to be excited about no surgeries in 2017!

Monday, January 9, 2017

Monday, January 9, 2017

Today was miss Kambri's first day back to school.  She ended up staying home last Tuesday after we removed the bandaging on the skin graft because her pants were rubbing on it and it was very sore.  Wednesday there was a big storm and I opted to keep my kids home and then Thursday and Friday were cancelled as snow days.  I am actually really grateful for an extra long break for a couple of reasons 1. more time for recovery 2. we actually got to play in the snow and enjoy our Christmas break. 

We still don't really know how much she can hear.  She tells us that she can hear a little bit but not really a noticeable difference yet.  There is still no sign of facial paralysis for which we are extremely grateful.

I've been reflecting on the last year a lot.  It's hard to come up with words to sum it all up.  To be honest, it took us a little while to accept the nubin and now it is taking us a little while to accept the ear.  Funny how that works.  We are looking forward to the final results.

Thursday, January 5, 2017

Thursday, January 5, 2017

One year ago today we started this reconstructive journey.  What a wild ride it has been!

We made yet another trip to Salt Lake this afternoon to see Dr. Shelton.  I actually cancelled the appointment because it was an official snow day but the office called me back and requested that we do our best to make it because they were worried about leaving the packing in the ear for too long, so we loaded up and hit the road.

Dr. Shelton removed the packing from the ear canal.  9 pieces to be exact.  Many tears were shed leading up to this appointment because she was worried that it was going to hurt.  He assured us that because of the newness of the skin graft that there would be no feeling yet which proved to be true.  We were grateful for that.
{there is a tv on the wall that shows what he sees through the microscope so we could watch as he removed the pieces}

There is still some "packing" behind the ear drum, it will dissolve over the next 3 months so hearing will come gradually.  Her first hearing test will be in 6 weeks and then another one in 4 months but he is confident that she will be able to hear.  It can take up to a year for the brain to learn how to make the ear function properly so it can be a slow process.  She cannot get any water in the ear for 6 weeks.  They also assessed her skin graft and said that it is healing nicely, although it is still very tender.  He referred us to a doctor that can possibly reconstruct her cheek.  We will look into that this year but have promised her no surgeries in 2017.
{Dr. Clough Shelton & Kambri}

Jared dropped me off at home & they went to Grandma's to pick up the boys.  I pulled the last few things together for the party.  They came home just a few minutes before 7.  As soon as she walked in the door she started to cheer.  Not a single guest had arrived yet and she was ecstatic!

A pinata & cake, just as she'd requested.
We had a steady stream of visitors and a full house all evening.   She told me over and over again, "this is the best day ever!".  
{Cousin Ellie & Kambri}
{Kambri & neighbors Ellie, Ali, Jaycie}
{Kambri & neighbors Jen, Kate & Karley}

We were a little stumped when it came to the pinata but her clever dad came up with a plan & it worked.

 Once again she was showered with love, support and gifts of all kinds.  We were extremely grateful for those who ventured out in the -21* temperatures to support her.  I've said it again and again but we are surrounded by the best of the best and are we are forever grateful!

Monday, January 2, 2017


Kambri has requested a trip to Disneyland (not in the cards with medical bills at the moment) and a party with a pinata and cake & ice cream (now that, we can do!) to celebrate her accomplishment!

Join us for a SURPRISE evening of celebration!
Date: Thursday, January 5, 2017
*Exactly 1 year since surgery #1
*They will remove the bandaging in the ear earlier that afternoon
Time: 7-8 pm (open house)
Place: The Strawn Residence
(I'm not going to post our address on here, if you are interested in coming and don't know where we live, please comment below or text me @ (435)760-5065)
We hope to see you there!


January 2, 2017

This girl never ceases to amaze me at how quickly she can bounce back.  She is doing very well.  We are grateful for the many prayers that contributed to her quick recovery.  We have received an outpouring of love and support and we are forever grateful!

We got our first look at the ear the day after surgery (12.29.16).  They drilled through the skull to create the ear canal.  They used an skin graft from her right hip to cover the inside of the ear canal.  Then they put in the prothesis ossicle bone and created an ear drum using the sinew (pronounced sin-yoo - a piece of tough fiberous tissue uniting muscle to bone or bone to bone; a tendon or ligament - taken from above her ear).  The ear is currently filled with a protective bolster (for lack of a better term) to keep the ear canal open, that is what they will remove on January 5th.  She should be able to tell us if she can hear at that time.  We cannot do an official hearing test for 3 months.
Post surgery bath time is always a little tricky since she can't get the ear wet.  We have her take a shower with a shower cap on and then we very carefully wash her hair in the kitchen sink which she thinks is hilarious.  We have her hold a cup over the ear just to be safe.

They shaved more of her head than we were expecting.  I was a bit shocked when we removed the protective cup after surgery. I caught her admiring it in the mirror and when she saw me she said, "I look like an adult man".  She is a little concerned about it but seems to be dealing with it pretty well.

The Skin Graft Site:
Taken 12/29/16
After draining some blood - Taken 12/31/16
After removing the bandaging - Taken 1/2/17
(we used the chapstick for size reference)

She will be going back to school tomorrow!  We were able to ween her off of all pain medication on Sunday and she has done really well. 

Thursday, December 29, 2016

Thursday, December 29, 2016

It was a bit of a long night.  She doesn't love that we wake her for meds but she's a pretty good sport about it most of the time.  Surgery always throws off her sleep schedule.

She is doing pretty well today.  The gauze on her ear is really irritating her.  She keeps picking at it and I keep reminding her to keep her little hands off of it.  The skin graft on her hip is very sore.  The skin graft that she had before was very painful but it was also very thick, this one is a lot thinner and should heal quickly. 

So far there is no sign of facial paralysis for which we are extremely grateful.  We will continue to watch and pray.

Lots of people are asking when we will know if she can hear.  Because the ear canal & inner ear are newly formed the body will try to close the hole because it hasn't been there before so it is deeply bandaged to keep it open as it heals.  They will remove the bandaging on the 5th of January, which is ironically, exactly one year since her first surgery.  Once they remove the bandaging she should be able to hear.  As far as an official hearing test though, we aren't sure when that will be yet.

Wednesday, December 28, 2016

Wednesday, December 28, 2016

Today is the big day!  Surgery #6!  On one hand we are so beyond ready to be done but on the other we can't believe that we are here at the end of this process.  What a year it has been!

The anticipation prior to surgery never get easier for any of us.  There is a wide range of emotion that accompanies each and every surgery.  Today's surgery will determine if it was all worth it.  It's quite invasive as they drill the skull to make an ear canal and connect all the dots to make the ear function.

They told us originally that surgery wouldn't even begin until after 3 pm which she immediately panicked about because that would mean that she would have to miss breakfast and lunch and dinner.  We were relieved when they called yesterday to tell us that there was a cancellation so it would be between 12-1 pm.  It's still a long day for a tiny, starving tummy but we have to check-in early so that helps to pass the time.

Check-in time was 10:45 am at University of Utah hospital.  It is a fantastic hospital but there is definitely a difference from PMCH.  We had to laugh when they brought her a coloring book from which she got to choose 1 page, it wasn't a big deal just so different from Primary's who provides a whole new coloring book (& a million other activities) each time.
{watching life flight come in - our hearts ache for those families every time it lands}

She was pretty nervous so the anesthesiologist decided to give her a little something to help her relax before taking her back to the OR.  She got quite silly and very chatty.  She had us laughing.  By the time it had fully kicked in, she was just babbling mumbles that we couldn't understand.

When they came to take her away she started to cry which just about rips my mom heart out every single time.  We sent her away with tears streaming down her cheeks at 1 pm.  It's hard to watch your heart be wheeled away to the operating room.  Even though we've done this many times, the emotion is always the same.  I'm grateful to have Jared by my side, he is my rock.

The wait is always long.  We always start our wait in the cafeteria with a bite to eat.  We opted to walk over to PMCH to the cafeteria, we hear the food is better (it's still hospital food) and their prices are a little nicer on the pocketbook.  As an added bonus it's familiar to us.  We laughed as we ate because we had hours and hours to wait yet we both felt rushed and an urgency to get back to the waiting room.

We got an update early into surgery, that she had been emotional but that she was now peacefully sleeping and they had started the procedure.  We are always grateful for updates.

Time seems to crawl in the waiting room.  My heart literally aches in my chest the whole time.  I always bring things to work on to help pass the time but I always have a hard time focusing on anything else.  We both do.  We received many messages & comments on Instagram that lifted us as we waited so thank you! 

They told us that they would give us a mid-surgery update but it never came so imagine our relief when 4 1/2 hours later (surgery was scheduled for 3 hours) Dr. Shelton walked into the room.  The first words out of his mouth were about how complicated it had been and he mentioned that over and over again as he spoke.  Apparently her facial nerve is located in a weird spot and it is attached to the bone.  He was able to separate the nerve from the bone but warned us of the increased possibility of facial paralysis.  He told us to watch in the coming weeks and if we see any changes that we need to see him immediately.  He then proceeded to draw a diagram on the leg of his scrubs as he explained that her ear bones (the ossicles) were deformed and would not function properly so they had to put in a prosthesis and also created an ear drum.  We knew this was a possibility but somehow, although we were prepared for these results, we felt like we had been sucker punched in that moment.  Many times we've heard results that have been hard for us to process, the emotions are impossible to express in word and this time was no different.

As always the next part of the wait is always the very longest.  We know that she is in post-op and we are just waiting to be called back to be with her.  I don't know how to describe what that part of the wait feels like but it's as if I go into zombie mode.  My heart aches and I can do nothing but stare and wonder and pray.

Anyone who knows me knows that I love a good sunset.  Just moments after the doctor had walked away I received a picture of a beautiful sunset with beautiful words of encouragement from a dear friend.  I also received a text from our good Bishop.  It's little things like this that carry us through.  Thank you to those of you who reached out to us, we are grateful for your support!

Today's wait was longer than usual and the nurse tried to prepare us for what we were about to encounter but I brushed it off because I know how she comes out of anesthesia, we have done this 8 times in her 7 years.  As we walked into the Post-Op we could hear her screams echoing down the halls and I realized that today was different than all of the other times.  Usually she is a little irritable but quiet mostly, today she was thrashing and screaming uncontrollably.  Everyone in that wing could hear her.  I thought if we held her hands and whispered in her ear that she might calm down but that didn't help.  Alligator tears rolled down her cheeks and mine.  I sent a text immediately to our families that simply read, "please pray, it's not going well" and I know within moments they were on their knees pleading for a miracle.  It was probably only 20 minutes but it felt like forever before the miracle came and they were able to get her pain under control.  We aren't sure why it was different this time but I do know it was absolutely heart-wrenching to watch.

I love that they dressed her owl for the operating room.  Kambri, not so much.  She made me undress it as soon as she was coherent enough to to notice.

We were able to get her calmed down enough to move to recovery.  She only had one bout of nauseousness this time around.  Once she was able to eat a popsicle and some crackers she was ready to go home.  She asked about a thousand times if we could go home so we were grateful when we got the ok.

I got to sit in the wheelchair and hold her on our way out.  I recounted the details of the day to her and told her what the doctor had said.  She took it well. To my relief she had already forgotten the trauma in post-op.

She was quite sure that she was going to wither away from starvation and requested chicken nuggets & ice cream so that's just what she got.  We were greeted when we got home (just after 9 pm) by my mom and Ellie (Kambri's cousin) with a warm dinner.  We are so grateful for the many prayers offered, the words of encouragement and support given, the acts of service performed and the love we've felt.  Thank you, from the bottom of our hearts, thank you!