Ezra - An Update

Ezra, 11 months on November 1, 2015

Ezra's personal reporter; Ezra's Gramma - since the beginning of summer and Ezra's diagnosis of Hyperinsulinism - these identities have been added to my hats. I'm overwhelmed and honored to have that responsibility.

There have been few days that someone - and usually more than one someone - has not inquired about Ezra. I am honored to speak for him; and I am truly overwhelmed by the multitudes who care, love, pray, and ask.

At follow up doctor visit in CA, Sept 2015

Ezra's Hyperinsulinism is being controlled medically. So far he is doing well. His parents, Jeff and Aubrey need to administer 2 injections daily, check his blood sugar multiple times during the day, and overnight hook him up to a bag of dextrose that is delivered directly to his stomach via a port.

Cubs at Dodger Stadium, Aug 2015

The learning curve is steep for the whole family. Even Aubrey, a physician, had never treated a person with this condition. Jeff, a pastor, is quite sure that he's earned the equivalent on an honorary RN.

Family hike, Oct 2015

 
We are so proud of Jeff and Aubrey. They are learning their new family normal and as much as possible not letting Ezra's condition change their lifestyle. He goes on the family hikes each Saturday; he has cheered at his first Cubs game; and he's loving being back with big brother Judah and big sister Naomi.

It appears that this condition is not affecting his physical development. At 11 months old, he is standing on his own, walking around furniture, and almost ready to brave that first step. He may be Jeff and Aubrey's youngest walker! He continues to be one of the happiest babies we've
known. Almost every picture has a smile.

You might remember the poem I posted earlier about our journey. Here is my continuation penned in July, August, and October. (The italics are stanza's from Ezra's perspective.)

The story continues,

Ezra's personal jet

The chapters grow and grow.
Ezra remains a source of joy to everyone he knows.

He smiles, he recognizes, he grows.
He reaches baby milestones
  inside hospital walls.
Sitting, teething, chattering with all.

Getting ready to fly, July 2, 2015

Three months,
Four ambulances,
  including one that soared the skies.
Four hospitals; two states;
Countless doctors standing by.

The nurses,
The tubes, the shots galore,
Controlling HI, not an easy chore.

On my way to surgery, July 14, 2015

Mom and Dad with me
Nana and Gramma sometimes too;
But Judah and Naomi, 
  Oh how I miss those two.

Surgery disappointed.
A new path of trust.
Keep those shots coming,
I guess, if you must.

Today is a new day (August 3, 2015),
Today I wave good bye
  to the last three months familiar
  and stare at clear blue skies. 

August 3, 2015

I meet my Great Grandma
  on the way home;
Then another airplane delivers me
  to the hugs and love of my southern fam.

The story not so young;
The chapters not so few;
And as the journey continues,
  Jesus, we keep our eyes on you.

Yoga Baby, July 2015

As I ponder these months,
  tears ready to spill,
The bond of love tightens,
  overwhelmed by family and friends
  old and new.

With another ER visit, (October 2015)
The reminder comes anew,
Gramma, keep your eyes on Jesus,
The one whose love is true.

Exploring, Oct 2015

On this 3 minute video, Aubrey does a great job of explaining what Hyperinsulinism by telling Ezra's story. And there is a bunch of fun pictures too.

https://www.facebook.com/aubrey.tell/videos/o.758541980942141/10153169532212452/?type=2&theater

If you would like to be a part of the Hyperinsulinism solution, click here to join the FUNdraiser:

https://www.facebook.com/events/758541980942141/763031673826505/ 

"For Ezra set his heart to study the Law of the LORD, and to do it, and to teach his statutes and rules in Israel."

Ezra 7:10

One of the scriptures I pray for our Ezra.