Shenaniganizer

Shenaniganizer: to perform, engage in, or produce mischief. 

Our shenaniganizer, Ezra, is 7 years old!

He had a super fun birthday which included some of Ezra's favorite things:

balloons, bubbles, balance challenges, pompoms, angel food cake & whipped cream, and hot tubbing.

It was a good day.

xoxo

Mr. Maniac

Today, Ezra turns 4 years old!

And he is also debuting a new nickname: Mr. Maniac.

Over the past month, Ezra has become a climber.

He scales up conventional climbing tools like this ladder to the top bunk.

It did not take long before Ezra was testing his emerging skills at every possible opportunity.

I began discovering Ezra perched on high places all around the house.  

He really enjoyed the location of this side table.  He would use the rocking horse to climb up and then pivot around so he was reclined.  This was the best position to check out the ceiling fan.

Ezra would turn the ceiling fan on and off with his toes at the wall switch....of course.

Sometimes I would discover him practicing headstands in his crib.

Every day a new summit was attempted and conquored.

And then came the realization that he could drag chairs around to facilitate out of reach platforms.

All this activity has introduced a parenting dilemma---we are thrilled by Ezra's developmental leap and are so excited for him....but we don't want him to think that standing on the dining table or kitchen counter will earn him a round of applause....or, at least, not every time!

Jesse and I see a reflection of our own personalities in him as he finds joy in exploration.  We recognize his persistence and inquisitive nature are utilized for creative problem solving.  A lot of Ezra's physical limitations make his methodology seem a little odd.  But where a typical child would rely on strength to muscle through some of these climbing challenges, Ezra is very thoughtful, careful and in many cases, makes smarter use of balance and leverage.

It's also really fun to see his sly smile as he admires his accomplishments.

His climbing abilities allow him to explore areas of the house which were previously less intriguing. 

Ezra's new favorite hiding spot is inside the drum of our washing machine....when I can't find him, that's where he is playing.

In addition to climbing UP Ezra has been experimenting with balancing on unstable surfaces like soft cushions and skateboards.

Well, Mr. Maniac, you have earned that title.

A year ago, Ezra was just starting to walk independently.  And before that, Ezra could only walk with maximum assistance or a supportive device.  

And now he's figuring out center of gravity. 

We are so proud of you Ezra!  Happy Birthday.

 I'll leave you with a short video of Ezra playing at the park....he's come a long way!

The last hours

Dear Jonah,

In a few hours it will be a new day....your birthday.

Right now you are sleeping.  Sleeping in the forest where tall cedars will shade the morning sunlight and the hushhhhh of the creek will muffle the sounds of other campers.  Because, for your birthday, you asked to go camping.  And go fishing.  And ride your bike.  And play frisbee golf.  And go swimming.  I love that you want to do it all.  And I especially love that being outdoors is essential to your ideal day.

You are incredible.

The video is a "rough cut" of the ad that Jonah did for Cleary Bikes last autumn.  The final was too big of a file for me to upload....and since we are moments away from you turning six...I thought I better post this while you are still five!  If you click on the Cleary Bikes hyperlink and scroll down the bottom of the home page, there's also another movie under the Trail Videos heading which features Jonah riding with his buddies Rocket and Sierra (the video on the left).

We love you Jonah!

Happy Birthday

Colander Party

What is a Colander Party, you ask?  It's Ezra's dream come true!

Yesterday, we celebrated Ezra turning 3 with a theme like no other: colanders.

Ezra loves colanders, mesh hats, salad spinners...anything that's perforated.  He enjoys stacking them, flipping them, feeling their texture, wearing them on his head, banging them together, and especially looking through them.

Jonah and Renee...remarkably neither flipped out of the hammock.

It was a beautiful day to enjoy with our family and friends.

What a difference a year makes!  Ezra now enjoys tasting all food, he will even chew and swallow--those are strawberry remnants on his face and hand.  He's making great progress and it is really exciting to see regular improvement in every area.

So much of Ezra's development is due in part of the wonderful therapy services he has received since birth.  Since Ezra's arrival, he has been part of Early Intervention which serves kids with developmental delays from birth until age 3.  We had our final visit with our Physical Therapist, Kelly, last week and it was sad to say goodbye.  Kelly has been coming into our home twice a month for the past three years and she basically feels like family at this point.

Here, Ezra is playing with his Occupational Therapist, Paul.  

We feel lucky to have had such a great local team.

And while it is bittersweet to be moving on, it means that Ezra is ready for the next chapter....

SCHOOL!

Yes, we have been busy planning for Ezra's transition out of the Early Intervention program and into the Special Education school-age program.  So today, Ezra went to preschool for the first time!  There are only a couple days of school remaining before summer vacation starts, so we are looking at these few days as "practice school".  We are big fans of our public preschool and I know that Ezra is going to grow tremendously in that environment.

Happy Birthday Ezra.  

You are amazing!

xoxo

Ezra turns 2!

These days our baby is looking more and more like a little boy.

Ezra recently inherited this green walking aid from a family in Salem.  It's called a Babywalk, and it helps kids with mobility issues gain independence by having walking support.

Ezra has only had it about 1 month, but he is already enjoying being able to explore on his own terms.

I never thought I would be so delighted to have a little troublemaker!

Ezra's birthday party was held in a beautiful old gymnasium just blocks from our house.

Ezra loved the open floor space and wheeled around in all directions.

The older kids played basketball, soccer, tag, and practiced some rock climbing moves.

Balloons.  A party is simply more fun with balloons.

Jonah and his buddies: Anders, Bella, and Dylan

"Make a silly face"!

We had pizza, kale salad, and fruit.

Oh, and cake too!

Jonah didn't actually make the cake...he was more like the CEO of cake-making

and oversaw the whole process---including picking the icing colors.

(black, really?....thank goodness for bumblebees)

Happy Birthday!

The next photo cracks me up.  This is Ezra's "food face."  If you sneak something in his mouth, he always makes this face, regardless of flavor.  Always.

He was much happier playing with the cake.

Thank you to all our friends and family (near and far) who made this celebration special for Ezra.

Opening presents started on Saturday and continued through the rest of the weekend.  

It worked really well to space them out.  Ezra loved everything!

The best present of all was seeing Ezra so happy...and tired.  

Ezra and Jonah share a bedroom, and usually have different bedtimes, but after the party we put them both to bed at the same time and IT WORKED.  

So we now have a new routine for our big two year old.

Of course, the next day, we were off to the skate park to burn up more energy!  

Ezra seemed to be embracing his new status.

And just like that, our baby is two.

We love you Ezra!

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!