Wednesday, August 12, 2015

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.

Saturday, August 1, 2015

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.

Friday, June 19, 2015

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.


Thursday, May 21, 2015

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!


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