Thursday, August 2, 2018: Chicago Day 1

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

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...

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!