Surgery

Today, Ezra will have the 7th surgery in his young life, a cochlear implant.

As I was silently mourning the loss of his natural hearing--I allowed myself to imagine Ezra never hearing my true voice or his father's or his brother's after this day.   After some tears and deep breaths I thought about what brought us to this decision.  I remembered that 7 months ago Ezra couldn't hear anything.  And that over these last 7 months Ezra has worn a hearing aid all waking hours.  And, although he clearly hears more noise with his hearing aid, it is not enough to imitate speech (which we would have expected by now).  I'm not certain what Ezra does hear, but it is certainly not what I do and now, with the aid of technology, what he will hear is going to be different, but clearer.  We are confident that the path of a cochlear implant will be Ezra's best chance for learning language.  Sometimes I need to allow myself moments of maternal anguish in order to make peace and move forward.  Like the sun setting over one landscape in order to bring light to a new day.

Ezra, we are so optimistic this will enrich your life.  And, even though we have said the words a thousand times, we hope that this surgery will be the beginning of hearing how much we love you.

Bowl of Delight

The last of the the leaves have fallen.

We happened upon an excellent heap at the skatepark. 

Jonah knew right what to do!

Bikes had the advantage in those conditions.  

The wall that Jesse is riding is basically vertical.  Because I'm a normal person, I just took pictures of the crazy one.  Jonah was shrieking,"do it again....higher!"  Oh, boy.

Farewell autumn.  Snow is in the forecast....just in time for Christmas!

I'm dreaming....

18 months

Ezra is 18 months old today!

He's a happy little dude...up for anything.

By anything, I include neurosurgery...here he is calmly preparing for that surgery at OHSU.

Here he is still waiting for surgery.
Ezra continues to be Mister No-Fuss and the King of Relaxation & Sleep.

This surgery was done in August.  The purpose was to remove a small lump on the back of his neck.

The surgery was more difficult and serious than everyone anticipated. We had hoped that the growth was superficial, but it went beyond the muscles, through the spine, and past the dura of the spinal cord -- into the spinal fluid. Fortunately, it terminated there and the neurosurgeon did not go into the cord itself. The connection from the outside world into his spinal fluid would have certainly allowed for meningitis at some point, so we are really happy to have it closed. We spent 3 days in the pediatric ICU recovering. In addition to that success, we are optimistic about the effects of releasing the tethered cord. There are a bunch of neurological disorders that are caused when tissue attachments limit the movement of the spinal cord within the spinal column. We began noticing positive changes in Ezra shortly after surgery and those small victories continue.

A renewed sense of hope and Ezra's noticeable progress has done wonders for our family morale.  

At 18 months Ezra loves:

baths, showers, & the hot tub 

(being outside and in water is endlessly fascinating and also apparently hilarious)

his big brother

throwing things on the floor (especially food)

peek a boo and other face games

patting his chest for comfort

pivoting his bumbo chair around to get places

saying "ah, ah" and "a-yah, a-yah"

swinging

getting tickled

his favorite baby sitters: Grandpa Swain, Nanna, and Old Mom

laughing

his pacifier

Brothers.

 In the ball pit at therapy.

I've started noticing that Ezra's baby blue eyes change colors to match his green shirts.

Showing off his latest trick of sitting up.

Ezra, you are a rock star.  

We are so proud of you and love you to pieces!

Sitting!

Guess who finally decided sitting up is cool?

I cannot tell you how excited I am for little Ezra.

Ezra has had the ability to sit up for many months, but, for the most part, chose not to.

At most, I could get him to sit up for 3 minutes and usually, once he realized that he was sitting, would immediately stiffen and push backward.

So you cannot imagine our surprise when Ezra decided to sit up yesterday for 10 minutes....and then again later that day for another 10 minutes.....and then today for 20 minutes.

And he's not just sitting still...he's playing, making balance adjustments, and somehow remaining upright even with Jonah's smothering hugs.

Hooray Ezra!  You did it!

We love you!

One Year Ago

One year ago, today, we were making snowballs, eating snowcones, and building snowmen.

That November snow ended up being our "winter" for the season.

I'm glad we enjoyed it at the time!

Jonah had a blast freezing his teeth while waiting for the school bus.

And also trying to freeze Daddy's teeth.

Today, we have about half of our leaves still on the trees; the zinnias and dahlias are still blooming!

The Columbia River started making its own clouds as the water evaporated and condensed in the cold air.  It was a pretty sight.

Hopefully, despite an anticipated warm and dry forecast for this winter, 

it won't be long before we get a dose of snow.

Autumn Arrival

Autumn has arrived!

It was pouring rain most of the weekend, but Jonah and I took advantage of a small sun break to go leaf hunting.

Our little cutie is sporting an entire outfit of handmedowns.  

Jacket: Jennifer

Long johns: Amy

Boots: Kerry

Thanks to all our friends---we are so grateful!

We have been super fortunate to visit the Oregon Coast twice this past month, and, I'm just realizing now, this outfit has been a staple.

Jonah currently loves learning about the ocean and deep sea creatures, the solar system and understanding why we have day, night, years, seasons, tides, gravity, etc.

However, he thinks to get a "new moon" you pop the old one....so we have a little more to cover.

Jonah is thriving in his role as older brother.  He is currently teaching Ezra sign language and is always very observant of his brother's needs.

I love this little guy so much!

Halloween coincided with one of our very rainy days,
which made staying indoors perfect for pumpkin carving.

Thanks Old Mom for the pumpkins!

But it wasn't too rainy...Jonah got all dressed up for Trick-or-Treating.

For Halloween Jonah wanted to be the main character from the children's show Tumble Leaf.  So here he is as Fig the Fox (along with his best friend Stick).  BIG thanks to Nanna for letting me use her sewing machine for the hat....and for also being so patient (late into the night) while I figured out how to make the darn thing with ears that stand up.  Jonah says he wants be be Fig again next year too.  Whew!

Happy autumn to you!

Jumps

This is Jonah, still three years old in this picture, jumping his bike at our local skate park.

As I'm sure you can tell from previous posts here and here, 

we are really proud of Jonah's love for riding.

I think one of the reasons he enjoys riding so much is because we don't push him...he enjoys figuring things out at his own pace and has fun playing with balance and momentum.

Shadow play...add a basket and we will have our own iconic ET moon rider.

Of course, bicycle advancements are not without consequence.
Most recently, Jonah dropped off an 18" rock wall (intentionally) and went over his handlebars (unintentionally) landing on his mouth.
He chipped three of his top front teeth and the one remaining intact is slowly turning gray.

I'm pondering the value of baby teeth at the moment and wondering whether a mouth guard or full face helmet might be beneficial for this little rider.

One in a Billion

Last week a renowned neurosurgeon said to me, 

"I have never told a parent that their child has as rare of an anomaly as I am telling you."

go on....

Ezra has a cleft in his spinal cord.  His spinal cord splits vertically and becomes two pieces of cord.

Diastematomyelia.

Our neurosurgeon told me that it is exceptionally rare because the cleft location is in his cervical spine.  And by rare, he means that there are EIGHT other individuals who have been identified as having a spinal cord cleft in the cervical spine....since the logging of medical records....in the world.

So I think that means that Ezra might literally be One in a Billion.

Way to go EZ!...

you continue to baffle every specialist,

challenge my threshold for heartache,

live every day happily and smiling,

and teach us that love is all you need.

I love you.

Hearing Birthday

One thing I came across while researching hearing loss is that everyone remembers and keeps track of their "hearing birthday."  When you have profound hearing loss and finally gain some access to sound, you are starting anew.  Your age doesn't reflect your abilities in hearing and speech.  And so, keeping track of this very important day is a way to measure progress for your adjusted hearing age.

The photo above is from Ezra's actual birthday.  

His birthday wish must have been to hear, because he started responding to sound....on his birthday....one week before his scheduled cochlear implant surgery.  

We could not believe it.

After Ezra was born, he failed his newborn hearing test.  Three times.

This was followed by a sleep Auditory Brainstem Response (ABR).  I kept Ezra awake so he was utterly exhausted at the time of his scheduled appointment, so he would fall asleep.  The problem is, under natural sleep, you can't test kiddos as loudly, or you might wake them up or cause them to twitch or startle which screws up the brain readings.  He registered in the severe to profound hearing loss range.

This test was followed by a sedated ABR.  His hearing loss was confirmed profound in both ears.  He had zero response at the maximum testing volume (90 decibels) of every frequency.

On his birthday, he startled and turned his head when he heard Jesse close the front door.  We thought it was a fluke because he's very sensitive to vibrations and visual cues.  But it was not a fluke.  Ezra continued to be startled by very loud noises.  We reported our observations to the different audiologists....how could this be happening?

I will never forget that, over Memorial Day weekend, I had doctors and audiologists taking time out of their holiday to respond to this news---I think it was just as unexpected and exciting for them as it was for us.

It's possible that Ezra's brain started making new connections.  It's likely that he suffered a 20 decibel loss just from congestion in his ears....and that fluid was drained when he got an ear tube placed in March.  But these things are educated guesses.  Ezra is super unique which makes it nearly impossible to compare his path to what would be typical.

On Wednesday we completed another sedated ABR.

Right ear: profound hearing loss (no response)

Left ear: severe hearing loss (responses between 65 and 75 decibels....depending on the frequency)

The great news is that Ezra's hearing aid is now useful.  We had it reprogrammed and he's been wearing it without any issues.  The audiologist is hopeful that the hearing aid is giving him access to sound as soft as 30-40 decibels.  Here's a chart from a hearing aid company, EarQ, to help understand what those numbers mean.

For now, the cochlear implant surgery is postponed.  We hope to see Ezra make progress over the next few months as he starts realizing that sound exists.  Babies start hearing in the womb as early as 18 weeks, so when most children start talking at around one year of age they have been listening and hearing for over 18 months.  It is amazing how much we take for granted.

I wonder if Ezra's peaceful disposition and ability to sleep through anything will start to evolve with this change.  I will miss this sweet baby, but can't wait to see what will happen.
In a year that has been filled with lots of difficult news, this feels like a victory.

Happy Hearing Birthday Ezra!
Thanks for making this day so easy to remember.

Ezra turns ONE!

Our sweet little Ezra turns 1 today.

At one year Ezra likes:

anything visual, being tickled, his pacifier, dancing, sleeping, ceiling fans, standing up (with help), peaches, hiking, showers, games, & watermelon.

He LOVES big brother Jonah.  Even Jonah's aggressive, somewhat smothering hugs make Ezra laugh.  I often find myself in the awkward parenting position of explaining to Jonah that it's not okay to bounce the beach ball off of Ezra's face even though he is clearly enjoying it.

Ezra doesn't really have any strong dislikes.  He doesn't eat or drink well, but I'm not certain it's because he dislikes it.  He also isn't crawling or sitting up yet, but those positions are difficult and uncomfortable for him.

Ezra's defining characteristic (besides fantastic hair and bright eyes) is his easygoing personality.  I am so grateful that Ezra is happy and peaceful.  

Here are some favorite photos from the past year.

Gardening outside with Mommy.

Adventures with Jonah.

Playing dress up as Macklemore.

Our sweet boys.

Loved by Great-grandma Nanna.

More gardening outside with Mommy.

Adoring Daddy.

Hamming it up with brother Jonah.

Winter hiking.

Bundle of cuteness!

Snuggles.

Bath time with Jonah.

Cold watermelon for teething.

Swinging in the hammock with Jonah.

Family cuddle time on weekend mornings.

We love you Ezra.  We are so glad you are here.

Happy Birthday Baby!