Part 4

6 years has brought hundreds of doctors 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.

{Dr. Elizabeth Preston - Audiologist}

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.  They looked at her sinuses and have decided to move forward with some allergy testing.  We will also be scheduling an appointment with a physician at Primary Children's Hospital to discuss what this means for our future.  After we left the office, my brother-in-law Tony (who works at the hospital) treated her to Cheetos & Strawberry Milk.  When I got to my car, I sent a mass text to our family and closest friends and started to cry.  Jared had already headed back to work, so Kambri and I sat in the car and cried together for just a moment.  I don't know what the future holds.  I don't know what will come in the years ahead.  But I do know that I love this little girl with every fiber for my being and that it will be alright.  Although my heart feels heavy, I also feel gratitude that it isn't something bigger or something life threatening.  It's a part of who she is and who she will become and I love that about her.  She has already proven that she can do hard things.  She is an outstanding little person who will do amazing things."

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...

Part 3

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 just finished earlier this year 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.  In my journal I wrote, " Yay!  She has finally found her voice.  She now squeals all day long and loud!  I have never been so grateful to hear the squeal of a baby.  I am grateful for the reminders everyday to be grateful for the little things...like a baby's voice."

{Jennifer Kite - Utah School for the Deaf & Blind}

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.  God is good and another tender mercy came and we received a grant from the United Healthcare Children's Foundation in the amount of $5000, exactly the amount we needed.  The medical bills were pouring in by the thousands so this grant was an amazing blessing!  

{6 years & multiple Baha's later I can say that they are worth every penny.  It absolutely helps her to hear!  However, I can also say that no child should ever be in charge of a $5000 item.  You name it, it has happened.  We've lost it, washed it, it's been thrown down the stairs, dropped and broken countless times.  We've had more than our fair share of repairs & replacements.  It was a source of stress many times over the years but it has been worth it.}

We've been blessed with some of the very best speech therapists over the years.  Each one of them have played a vital role in Kambri's success.  Words cannot express our gratitude for them.

{Marge Edwards - Sound Beginnings}

{Ali Devey - Sound Beginnings}

{Lisa McBride - Sound Beginnings}

{Angie Anderson - Sound Beginnings Graduate Student}

{Claire Yoshida - Sound Beginnings Graduate Student}

{Brandi Nielson - Sound Beginnings}

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.  I could write 100 posts about Sound Beginnings & the people and the experiences we had there but I will spare you the details and just simply say it was amazing and we are forever grateful.   

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 teachers Nicole & Marie}

{Wendy the receptionist}

She continued speech therapy & regular audiology appointments at Sound Beginnings but got to be in my preschool class for one year before entering Kindergarten.  That year of preschool was a cherished time for us.

Part 2

I had always thought the birth of a baby was a miracle but after Kambri was born I caught a glimpse of the magnitude of the miracle.  Although it was one of the most stressful times in our lives, the blessings poured in and we recognized God's hand in our lives, something that we had sort of lost sight of in the years previously.  The first few months of her life played a crucial role in our journey back to finding God.  God works in mysterious ways.

The first year of her life was busy.  She cried.all.the.time.  Her feet were blue and she was stiff as a board most of the time.  She would arch her back and scream.  We saw more doctors & specialists than I care to count.  We were sure something serious must be going on.  It seemed like with every appointment, more questions came.

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 it's 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 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 (her surgeon) for the very first time.  I remember that appointment vividly.  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.

I had struggled to know if I had done something during pregnancy to cause this and he confirmed that it was simply a birth defect.  He told us that it is usually on the right side (true in her case) but is more common in boys.  Most cases look very similar and it can affect the entire face and neck.  He confirmed that the skin tag on her cheek was probably connected to the Microtia.  

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.

The best advice we were ever given came from a doctor who said, "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.

Perspective

Written by Sonja Larsen {Kambri's grandma}

About a week before Kambri was born Steve and I were watching the news one morning and we saw a mouse with an ear growing on it's back.  I commented that I didn't think we should be growing body parts on mice.  Just a week later when Kambri was born suddenly my whole perspective changed and I said excitedly this time "they grow ears on mice!".  The process itself had not changed, but suddenly because of a need we had I saw it differently.  Now I recognized it as a miracle.  How many times do we not see a miracle until first we recognize a need?

Welcome to Holland

I'll never forget the day I was introduced to this story by a mom in similar circumstances.  I loved it immediately.  It assisted in my journey to redefining perfect.


Welcome to Holland 
by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland".

"Holland?!?", you say, "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would have never met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...And for the rest of your life, you will say "Yes, that's where I was supposed to go.  That's what I had planned."

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.



I have a painting of Holland that sits on the table in my entry way as a constant reminder that "Holland" is beautiful and just how lucky we are to be on this journey.

Part 1

It was October of 2008 when the test showed positive.  Finally, after 14 months of trying, we were going to have a baby and we were ecstatic!  In December we found out that it would be a beautiful baby girl that would be joining our family.

On June 3, 2009 I had an appointment with Dr. Horsley.  He told me to go for a walk and then to head upstairs because it was time to have a baby.  There had been a few concerns during the pregnancy so we were anxious to get her here.

I was dialated to a 5 for hours on end with no change.  The doctor finally did some investigating and found that her head was not placed in the correct position for proper delivery.  Once he moved her head into position, I went from a 5 to a 10 and she was born in a matter of minutes.  My mom just happened to be in the room as all of this was happening so she ended up being there for the delivery unexpectedly, which turned out to be an incredible blessing.  We welcomed our sweet baby girl at 5:50 pm.

.

I remember the doctor holding her up so I could see her sweet face, just long enough for me to notice the large skin tag and to say "her ear is folded over" just as I realized that there was actually no ear but just a little formation of skin which we later lovingly nicknamed her nubin.

Jared followed Kambri while my mom stayed by my side.  It was a tender mercy that mom was there, I needed her while Jared was whisked away with the baby.

 

Kaden loved her right from the moment he saw her and proudly announced, "my baby's so cute, she has a nipple right on her face".  Years later we still laugh about that.  They simply tied a string around  the skin tag and within just a few weeks it fell off leaving a cute little scar on her cheek that we now love.

The next few days held a whirlwind of events.  Doctors, specialists & test after test consumed us.  I stayed strong, I didn't cry, I refused to cry.  This was my baby girl and I was not going to allow myself to be sad about this.  It wasn't until day 3 when something totally unrelated set me off.  I lost it.  I bawled like a baby.  Jared had gone back to work because he couldn't stand one more minute at the hospital so mom had come to spend the day with us.  I bawled all day long.  I couldn't pull myself together and then the guilt set in.  I had let her down.  I had proven that I wasn't up for the challenge, that I wasn't going to be a good enough mom for her.  I had proven that I was disappointed. 

Over the next few days, weeks and even months I worked through many emotions until I realized that it was okay to be disappointed.  Everyone dreams of a perfect baby with 10 fingers and 10 toes and perfect little ears.  Everyone wants the very best for their little ones.  I learned that lots of unknowns & questions, coupled with a wide range of emotions didn't mean that we weren't excited to have her but rather that we loved her so deeply, so unconditionally, so perfectly that we only wanted the very best for her.

What we once considered a trial, we have come to learn is actually one of our very greatest blessings.  Over time our definition of "perfect" changed.  What we once saw as an imperfection, we now see is actually one of the very things that makes her absolutely perfect.