Milestones

Here’s the thumbnail sketch of some of the most important milestones in Eliana’s journey. Once you’re up to speed, keep up with our updates by subscribing to the blog (on the top right of the homepage).

July 16, 2013:  Eliana is born!  Emergency C-section about 6 weeks early, but she was born.

July 18, 2013: Balloon valvuloplasty of the pulmonary artery on Day 2 of Life  (blowing open the heart valve that leads to the lungs).

July 23, 2013:  Held Eliana for the very first time (awwww…)

August 17, 2013: Peritoneal Dialysis catheter installed; first dialysis cycle.  (And read this one about ways to help – still a good one even years later.)

August 29, 2013: Caring for Eliana first analogized to wrestling an alligator with a mustache.

September 2, 2013: First bout of peritonitis.

October 10, 2013: Official diagnosis of Denys-Drash Syndrome – a crazy-rare diagnosis made only about 250 times. Ever.

October 25, 2013: Eliana. Came. Home.    With 14 prescriptions.    Also, first in-home nursing shift.  Weird.

October 27, 2013: First walk around the block as a family.  Hell yeah.

January 30, 2014:  Inserted G-tube for feeding purposes.  Pregame analysis pretty good too.  What have we been doing since back in October?  Mostly trying (somewhat unsuccessfully) to keep her NJ feeding tube in place.

May 27, 2014:  Eliana moves – and does other stuff she shouldn’t be able to do – mysteriously.

June 2, 2014:  Nurse cuts off the end of Eliana’s dialysis catheter.  Hank’s role as Mr. Worst Case Scenario validated.

July 16, 2014:  Eliana turns ONE YEAR OLD!!

August 12, 2014:  Eliana’s old, non-functioning kidneys removed.  Also the first hospitalization to feature our memory foam bedroll for (slightly) more sleep comfort.

September 26, 2014:  Central line removed because of infection.  Somehow didn’t write about it…who knows why?

October 20, 2014:  First official movement towards getting Eliana on The List for transplant.

November 2014 – April 2015:  Things so crazily uneventful we barely have anything to say.  Seriously.  But still not on the transplant list.

April 22, 2015: Aaaaaaalmost within striking distance of The List.  Last ditch post to ask folks to consider being a live donor.  No longer particularly relevant, but a good read.

May 14, 2015:  Eliana officially activated on the deceased donor list. Yay!

May 20, 2015:  Phone call at 4:15 am to let us know she’s moved up the list to receive a kidney.  Now.  And later that afternoon…WE HAVE PEE!  (Hey…it’s a big deal, OK?)

June 12, 2015:  Eliana comes home, and the next phase begins.

July 16, 2015:  Eliana turns TWO, almost exactly one year from her last birthday.  Who’d a-thunk it, right?

October 20, 2015:  We have crawling!  Yesindeedydo!

1 Comment Add your own

  • 1. Darin Roodman  |  December 1, 2016 at 4:30 AM

    I’m really happy for you guys. I’m a bit jealous too. My wife and I have an Eliana Tova, we lost her 16 months ago to Trisome 18 (another rare genetic disorder). I’m so happy that your Eliana is doing so well, and I hope she continues to grow and flourish and keep rocking life. She’s beautiful.

    Reply

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