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!

Victory

A weight has been lifted.  Many of you don't know that I have been battling with our insurance company since the end of 2016 to get more therapy visits covered for Ezra.  As a parent of a medically complex child, we see specialists from practically every rehabilitative sector: physical therapists, occupational therapists, speech therapists, dietitian, audiologist, chiropractor, etc.  I have learned that within every discipline there are therapists who have specific expertise in different areas.  We have been fortunate enough to be connected with therapists who share the same title but have unique and relevant experience to help Ezra.  For example, we see several Speech Pathologists.  One of them is part of Ezra’s Cochlear Implant Team and specializes in therapy for children with hearing loss.  We also see a Speech Pathologist who is part of Ezra’s Cleft Palate Team.  The third Speech Pathologist we see is part of our Feeding Team.  I consider each of these therapies to be distinctly different and vital to Ezra’s progress.  That's what I was trying to communicate to our insurance company.  Our policy provides exceptions for certain "chronic conditions" and my claim was that Ezra's diagnosis should fall under that category.  

This 6+ month conflict was such a slog.  It involved so many hours on the phone, waiting on hold, getting transferred around to different department experts, acquiring letters of support from Ezra's therapists, explaining our unique situation, defending the medical necessity, petitioning to defer payment for services, paying for visits to avoid collections, receiving denial letters, feeling frustrated by contradictions in the health system, advancing to higher levels of appeal...it was a LOAD, and as a non-complainer, one that I held privately.  A few weeks ago, I argued Ezra's case to a panel of doctors.  It is the highest appeal option and that ruling is final.  We won.  I got the call today.  And not only did they retroactively approve his therapy visits for 2016, they are giving him unlimited therapy visits the rest of this year.  They told me his case was the first to successfully appeal under the "chronic conditions" exception and that they would be looking into the policy language with their lawyers to see what modifications could be made so that we would not need to appeal for services in the future. 

I'm going to love not thinking about this anymore.

So much effort.  So much relief.

Go Team Ezra!

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