Redefining Perfect

April 14, 2020

2020-04-14T12:37:00.002-07:00

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

2019-10-08T12:15:00.000-07:00

...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

2019-06-05T14:01:00.001-07:00

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

2018-10-09T12:52:00.003-07:00

October 3, 2018

2018-10-03T13:05:00.003-07:00

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

2018-08-05T12:54:00.000-07:00

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

2018-08-04T12:35:00.000-07:00

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

2018-08-03T11:45:00.000-07:00

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!

Thursday, August 2, 2018: Chicago Day 1

2018-08-02T23:00:00.000-07:00

With big decisions lying ahead about what to do with Kam's ear, we are desperately seeking some direction. We felt really strongly about the route we chose with Dr. Muntz & Dr. Shelton, which we can't say we regret, but now as we are looking to revise what has been done it's been a lot harder to be confident in our decisions this time around. In our search for answers we came across a conference in Chicago for Microtia Atresia patients. We registered for the conference in April but then were flooded with questions: would the conference be beneficial to our specific circumstances since we've already attempted reconstruction? Is it worth the investment of our time & money? With a thousand questions on our minds, we went back and forth on whether or not we should make this a priority. Finally on the 19th of July (months later & merely weeks before the conference), with a pit in our stomachs, we booked our (very expensive!) flights & (very expensive!) hotel to make it official and then crossed our fingers that it would be worth it.

With an early flight to catch, we spent our first night in Salt Lake. We invited Ellie (Kambri's cousin) to tag along. To say they were excited would be an understatement. They spent days researching Chicago & made a whole list of things they wanted to see & do.

They were great travelers & made our lives easy.

We were a little nervous to be exploring the city with two little girls in tow but we made it onto the subway and downtown without a hitch. Hallelujah!

CHICAGO! Little girls. Big city.

We had done our research and opted to walk instead of renting a car for a couple of reasons: 1. Traffic 2. Parking was $70/day at our hotel. Ouch! While walking was a wise decision, we spent a lot of time walking - we averaged 5-6 miles every day. We had a good system walking two by two, hand in hand everywhere we went.

It was a few miles from the subway station to our hotel, add a million people and the 4 of us dragging our luggage behind, not to mention google maps zig zag directions, it took us a long time to get to our hotel so we were grateful for a moment to recoop when we finally arrived.

After a long day of travel, we were ready for something to eat. Chicago Pizza was first on our list and it did not disappoint.

We spent the afternoon & evening wandering the big city and just taking it all in. The architecture is fascinating.

We made our way to the famous Millennium Park and had a great time exploring all that it has to offer.

The city is magnificent. The buildings are incredible and people are in abundance. There is constant honking and the sirens echo loudly.

The highlight of our day was definitely the street performers. Some of this group is on this season of America's Got Talent and they did not disappoint. In fact, we watched their show twice because it was so cool - that was the best $20 we spent all week.

These guys were cool too.

We rounded off the day with most delicious Ghirardelli Ice Cream before heading back to the pool.

(side note: Kambri lost her water headband a week before we left so we taped her ear closed with medical tape & it worked like a charm!)

Friday, April 13, 2018

2018-04-13T14:32:00.000-07:00

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!

...Results...

2018-03-15T13:39:00.003-07:00

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

2017-02-23T19:00:00.000-08:00

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.

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

2017-01-23T15:18:00.002-08:00

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!”

January 20, 2017

2017-01-20T16:15:00.002-08:00

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

2017-01-09T14:21:00.001-08:00

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

2017-01-05T23:30:00.000-08:00

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!

SURPRISE!

2017-01-02T21:08:00.002-08:00

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!

PLEASE HELP US KEEP THIS A SECRET FROM KAMBRI!

January 2, 2017

2017-01-02T20:44:00.001-08:00

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

2016-12-29T14:00:00.000-08:00

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

2016-12-28T23:30:00.000-08:00

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!

2016-12-28T09:00:00.000-08:00

These pictures tell a story! It's a story of the transformation of an ear but also one of a beautiful little girl who has conquered hard things! Today's surgery will determine if it was all worth it as they attempt to reconstruct the inner ear to restore hearing. It's been a year of sleepless nights, countless doctor visits, many miles back and forth to Primary's, many tears, pain meds & barf bags but it has also been a year of growth, courage, service and gratitude!

Photo Credit: Stacey Hansen Photography

Surgery #6

2016-12-28T08:00:00.000-08:00

Photo Credit: Stacey Hansen Photography

Tuesday, December 27, 2016

2016-12-27T22:00:00.000-08:00

Primary Children's Hospital has been so good to us this year! With every surgery, we have been blown away at the generosity & gifts we've received. They have managed to make a miserable experience very positive. After our first hospital stay, we decided that we wanted to pay it forward so we have spent the year gathering and collecting items to donate to other children in hopes of making their time at Primary's a little bit more pleasant also. We are extremely grateful for the donations we've received, we were able to collect more than we ever imagined. As a family, we shopped on multiple occasions for items to donate. Kambri donated some of her own money to the cause. We loved watching our kids search & decide on what they thought would make someone else happy. Friends and family members joined our efforts & donated blankets, toys, puzzles, coloring books and much more and we are grateful. This afternoon we were able to deliver two heaping wagons full of surprises in hopes to brighten someone else's day.

Kambri had a pre-op & hearing test with Dr. Shelton at the University of Utah hospital this afternoon. We've become quite familiar with PMCH & Dr. Muntz so it is a little scary exploring new territory again. We spent most of our appointment with the resident doctor, Dr. Cox. He answered our questions and explained the details of what to expect. Dr. Shelton joined us briefly too, once again explaining the procedure along with the risks. Ready or not, the time has come once again.

Fasting is usually one of the things that she stresses about most so we took her to Costa Vida (her favorite!) for dinner on the way home. She finished what she could at the restaurant and then polished it off before bed.

We are grateful for the countless acts of service on our behalf. We are grateful for my mom & sister who are juggling our boys so that we can be where we need to be. We are grateful for Jared's co-worker and his wife who gave Kambri a good luck gift along with a surprise for each of our boys. We are grateful for the messages of encouragement and prayers offered. Thank you!!

Primary Children's Hospital Fundraiser

2016-11-16T13:26:00.004-08:00

As a family we are collecting coloring books, toys, blankets, books, puzzles, craft kits and more to donate to the children at Primary Children's Hospital. If you would like to join us in this effort by donating items or making a cash donation for the purchase of these items, please let us know! All items will be delivered on December 28th, the day of Kambri's last surgery! THANK YOU!

To make a donation contact:

Stephanie (435)760-5065

strawn05@hotmail.com

Wednesday, November 16, 2016

2016-11-16T13:19:00.001-08:00

It's been a little while so I think it's time for an update. We are enjoying a little break from the life of surgery. We have about a month and a half before we hit it hard once again. This will be the last and final reconstruction surgery and the most exciting, they will restore hearing & the ear should function after this one! We are excited for that!

In addition to Microtia-Atresia, Kambri has hemifacial microsomia which means that the right side of her face is underdeveloped and does not grow normally. We've known that this could cause problems for her jaw since she was a baby. Our dentist keeps a close eye on her and at our last appointment recommended that we see a specialist. This week we met with him and he confirmed that surgery is not necessary at this point. Although it does veer to the right, the jaw seems to be lining up and functioning properly. We were grateful for good news!

{you can see that the right (appears on the left in the picture) joint is deformed and significantly smaller than the other side. They will probably do surgery when she is about 15 years old to correct this}

When they removed the skin tag on her cheek, it caused her cute little cheek to cave in. Because of development, that side of her face has always been smaller but removing the skin tag has made it more noticeable. The skin tag held more substance than we realized. We are exploring options to fix that which may mean another surgery in the near(ish) future.

We continue to be blown away by her positive attitude and courage to conquer hard things!

{Photo Credit: Stacey Hansen Photography}