Camping With A Side Of Doctors

The few days after Cole's diagnosis were filled with deep grief.  I don't think I was able to do much more than lay around for the weekend following that fateful Thursday appointment.  There was a lot of extra hugging happening too. 

If you ever need a hug, Jack Panther, is the KING of long and meaningful snuggles

 One week after Cole's deafness diagnosis, we began our diagnostic journey.  Why was he deaf?  What happened?  Was there something wrong with the shape of his ear canal or ear drum?  Was it the cochlea or the auditory nerve?

We were able to get in right away (Aug 6th) to see our friend, Dr. Greg Haveman.  Greg and David were good friends in undergrad at George Fox.  Greg went on from Fox to attend University of Washington Medical School and then after ENT residency, ended up moving to Walla Walla.  It was so helpful to have someone we trust on the front end of this journey.  Greg took a look at Cole's ears and everything looked great on the surface.  The next step would be getting a CT and possible MRI to see exactly where the problem was happening.  

We mentioned that we were interested in possibly heading to Seattle Children's Hospital in the future and he told us to go right away.  Sometimes when you get a CT done in a small town, Children's will want it re-done on their own high tech equipment.  Transferring care right away would save us an extra procedure.  Hooray!  Thank you, Dr. Haveman!

He transferred all of our records the same day and we got a call right away from Seattle to schedule our first consult with a surgeon.  It just so happened that the scheduler I was speaking with happened to schedule us with a world renown surgeon named Dr. Rubinstein.  We knew nothing of him at the time, but God did. 

[Cole, do you see how quickly all of these steps happened?  It was like God rolled out a golden path with bright road signs, "Walk in this way."  It's hard to get appointments with special ear doctors, but God helped us get every single appointment very, very quickly.  God is so good.]

Two weeks after seeing Dr. Haveman, we were at the base of Mt. Rainier for our yearly camping trip.  We brought two cars on this trip so Cole and I could jaunt over to Seattle for the day on Friday, August 21st for our first Seattle Children's appointment and then back to camping.  

Our mountain, 2020

You've just got to represent when you're on the West side. Go Cougs!

After several days of camping and letting the boys be as dirty as they wanted to be, Dave and I did our best to give Cole a wipe down with baby wipes, paying special attention to his dirt packed ears.  And then, Cole and I headed off on our adventure to Seattle.  You'd think that Mt. Rainier would be a quick drive to the city, but it actually took several hours to reach the hospital.  We made it in time and were instantly greeted with easy, free parking and easy access to the hospital.  The Oceans building where ENT and the Child Communications Center are located is decorated top to bottom with ocean creatures.  There is so much to see on every wall, ceiling, and floor.  While many difficult things happen in this place, they have put in every effort to make it a happy place for children.  

The check in was fast and within a few minutes we were called back to meet Dr. Susan Norton, the Director of the Cochlear Implant Program at SCH.  We had a great interview with her and then were ready for another hearing test.  The goal was to confirm the findings of our first hearing screening and get as clear a picture as possible of what he was and was not able to hear.  Sure enough.  Same results as the first screening.

Red = Right Ear; Blue = Left Ear

8-21-2020

As we were checking in for our second appointment of the day to meet an ENT surgeon, each person we encountered at the front desk and then the nurse who took us back all made comments about how lucky we were to have an appointment with the legend that is Dr. Rubinstein.  We didn't choose to be seen by him.  It just so happened that he happened to be working this clinic the day we were there.  The truth we'd later learn is that Dr. Rubinstein primarily works at the University of Washington and only works at SCH roughly 2 days a month.  This was yet another incredible Providence from God.  

Our meeting went really well.  We learned more about Cole's deafness.  If he would have had conductive hearing loss (problems in the outer or middle ear), he would be a candidate for hearing aids.  But Cole's deafness was profound sensorineural hearing loss (problems with the inner ear or auditory nerve).  Hearing aids wouldn't do anything for him.

Dr. Rubinstein talked through our options going forward:

1) A CROS device which would mean wearing hearing aid like devices in both ears.  His deaf ear would have a microphone that would carry the sound over to his hearing ear.

2) A BAHA device which is a bone anchored device which works similarly to the CROS system in that it carries sound from the deaf side to the hearing side, but this one doesn't need hearing aid like devices because the sound travels through the bones of the skull.

3) Only very rarely do they do the third option of cochlear implants.  This is a major surgery of implanting a device under the skin that would be paired with a device on the outside to translate sound into electronic pulses to send sound through the auditory nerve on his deaf side.  This is the ONLY option that would give Cole directionality of sound.  The other two options simply carry sound to his deaf side and wouldn't actually give him the ability to distinguish where sound was coming from.

Cochlear Implants were approved by the FDA for single sided deaf children in the summer of 2019.  While the devices have been around for decades, there really is very little research done on single sided deaf (SSD) kids.  Our surgeon respected that this was the path we would like to choose as a family and he was ready to walk us through the process.

We left that day with lots of information, special stickers, and a path forward.

I snapped this pic a we were driving out of the parking lot with that deep feeling that we'd be seeing a lot of this place in the near future.

Then it was back to our mountain and another day of hiking with our boys!

Sounds Like Weather

I started this blog shortly after David and I were married in 2008.  We were far from family and just beginning a new adventure through medical school in Loma Linda, CA.  A blog seemed like a good place to record our experiences and to help our families stay "in the know" on the goings-on of our lives.  I did my best to faithfully and regularly post.  Then, as our Pittsburgh fellowship year began, I dropped off the face of the earth.  Partly, this was because I needed to pour myself into my side hustle as a book lady in order to keep a roof over our head and food on the table, and the other part was that I was embarking on homeschooling little Kindergartener Jack for the first time.  Needless to say, Mama ran out of time for blogging.  This and the growing nature of social media with its instant posts replaced my need to write.

BUT

Here I am again.  There is something incredible about reading past entries which reflect my excitement for the future and sometimes my fears and doubts.  Looking back, I see how God was orchestrating my good through each trial and triumph He led me through.  When God was leading Joshua and the Israelites into the Promised Land (finally), He commanded them to set up a stone marker.  When their children asked them what the marker was for, they were to recount what God had done. My purpose in writing this series of posts is to set up a stone marker for Cole to read when he gets older.  I want him to know the incredible ways God went before him and with him through his deafness as a child.  The Lord has been near.  He has accomplished much, answered prayers, comforted, and guided us through the past year and we have full confidence that He has MUCH in store for our boy in the future.

So let's start at the very beginning.

When Cole was born (Feb 2016), he passed his newborn hearing screening.  We were given every cause to believe that his hearing was perfectly normal, and it may have been at that point.  Cole developed at the normal pace, gaining language at the same pace as his brothers and thriving as a little guy.  Starting when he was 3.5 or so, we noticed that we constantly had to ask him to stop yelling, but this was easy to chock up to the fact that he is the 3rd born boy in a very noisy household.  Our frustration with his yelling was building a bit during his 4th year and I was noticing that I was getting near daily headaches as a result of his yelling.  

But on Saturday, July 25, 2020, we were completely knocked off our feet by an incident in the kitchen. Dave was doing dishes and listening to some music on his earbuds.  Cole asked him what was in his ears and Dave said, "Here, let me show you."  He placed the right ear bud in Cole's ear and he just gave Dave a funny look and said he didn’t hear anything. Dave checked to hear that music was still playing and tried the left ear. Cole said, "Cool...music." Going back to the right, he said "It sounds like the weather."  Dave said, "What do you mean?"  Cole replied with a low, rumbling sound."

[Cole, when you read this someday, I want you to see God's hand in this moment.  Daddy could have placed the left ear bud in your ear first and we wouldn't have known there was a problem on your right ear.  God is Sovereign.  He rules over all of His Creation, even Daddy's choice to put the right ear bud in your ear first.]

We were able to schedule an audiology appointment for the following Thursday.  At the time, our audiologist here at Walla Walla Clinic was Dr. Lydia Rogers who formerly worked at Seattle Children's Hospital and is a pro with little kids.  Cole and I masked up and went to test his ears.  Cole went into a little sound booth and had earphones placed in each ear.  First they tested his left ear as a baseline.  Whenever he heard a sound, he would announce whether he heard a Daddy bird (low tones), a Mama bird (middle tones), or a Baby bird (high tones) and then placed a peg in a color board.  Left ear was totally normal.

As they began testing his right ear, they had to play loud "masking," white noise sounds in his left ear.  They had to play the sounds very, VERY loudly into his right ear and without the masking, his left ear would have heard the sounds residually.  Dr. Rogers remained quiet as she worked.  I could see that he wasn't hearing what she was playing, but didn't understand the full extent of what she was finding.  At the end of the exam, she turned and said, "Cole has profound hearing loss in his right ear."   And even upon hearing that, the word deaf was still the farthest from my mind.  Sometimes "doctor words" meant to soften the blow only confuse.  It wasn't until later that evening that my husband used the words, "stone-cold deaf" to get the idea across to me did I understand the results of the test.

The moments after a hard diagnosis are interesting.  Our brains need time to grapple with new realities.  As the afternoon progressed, we called our families to let them know the news.  The grief was building.  Our boy would never be able to hear the direction a teammate was yelling from, never hear the direction from which a vehicle is approaching, never win at Marco Polo.  And with the grief came the guilt.  Just days before his diagnosis, I called to him from my bedroom to come to me and then scolded him for not listening and instead wandering around the rest of the house.  No, he wasn't being naughty.  He couldn't hear where the sound was coming from.  

As Dave put the boys down for bed, I went outside to close the back gate and was stopped in my tracks by the most beautiful sunset.  God was near.  God said, "Just you wait.  You can't even imagine the beauty I will bring from these ashes.  Cole is mine.  He is beloved.  I am with him and I am with you.  Trust me.  Lean in. I will accomplish all my good pleasure."

Dave and I finished the evening by talking through all the things together and preparing ourselves for next steps which included an ENT appointment with our friend, Dr. Greg Haveman. July 29, 2020 was a pivotal day in our family and in Cole's life.  Everything would be different going forward.

Color Me Pittsburgh Surprised

** I logged into my neglected blog to write and save the experience of Cole's Cochlear Implant and found a draft of a post that has been waiting there for 5 years.  Oops.  I can't believe its been FIVE years since our incredible experience in Pittsburgh for Dave's Mohs Fellowship.  We still are very close with our neighbors, Betty & Amy, who adopted our kids as their grandchildren.  Given the chance, we'd move back in a heartbeat.  So, five years later, I'm posting this long overdue Ode to Pittsburgh. **

Oh Pittsburgh, you have surprised us!

You were our top choice for fellowship and we were absolutely over the moon to have matched here
but we weren't very hopeful for our enjoyment of this place beyond Dave's job.  I thought I'd just pass my time here until it was time to move back to Washington at the end of the year.

Little did we know how very much we would LOVE it here.  Here are some of our favorite Pittsburgh surprises:

1) We have a beautiful green lawn but have never watered it.  Not once.  Coming from drought ridden So Cal, seeing lush, green foliage everywhere was a delight.

2) Pittsburgh drivers drive FAST!  They drive faster than So Cal drivers.  I know that sounds insane, but it's true.  The speed limit on the freeway is 55 mph and people routinely drive over 75 mph.

3) West coast people think that east coast people are cold and, dare I say, unkind.  You want to know the truth?  The average Pittsburgher may appear unfriendly or unkind but that couldn't be farther from the truth.  The moment you say "hi", they instantly smile and respond in kindness.  The number of people who have gone out of their way to be kind to our family is staggering.

4) Sometimes that kindness drives us nuts.  People are SO kind that they constantly break traffic rules in favor of being "kind".  It creates confusion and can be dangerous sometimes.

5) Pittsburgh as a city is absolutely stunning.  It is surrounded by rivers and has the highest number of bridges of any major US city.  The architecture is interesting and varied.  The hills surrounding the city, especially where we live in the south, are absolutely beautiful.

6) Wild animals - deer, bunnies, wild turkeys, you name it, they are in our backyard on the regular

7) Our garbage truck driver physically empties our poopy diaper laden trash bin into the garbage truck and does it with a smile on his face.

8) This is an incredible place to live with small kids.  There are so many parks, programs, and MUSEUMS to explore.