Sunday, August 5, 2018: Chicago Day 4

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

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

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

A trip down the river...

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

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

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

Saturday, August 4, 2018: Chicago Day 3

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

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

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

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

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

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

Friday, August 3, 2018: Chicago Day 2

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

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

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

The city is fascinating!

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

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

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

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

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

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

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

Next stop...dinner at The Cheesecake Factory.

Then off to the conference!

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

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

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!)