Sunday, April 20, 2014

Live it Happy

One thing I've often heard, from some wise cardiac practitioners, is:  "Families whose HLHS child is doing well, are not sharing their journeys online - they're busy living their lives."  I always thought, "yeah, that's probably true..."

Well, it must be true. 

My last blog update was in January!  We've certainly been busy living our lives.

Life post-Fontan is beautiful.  We've very much settled into normalcy.  Zoe is doing incredible.  We actually saw this (a definite first) last week:

100% oxygen saturation!!!
Zoe had a cardiology appointment in early March and Dr. Stock was impressed with her clinical presentation - so much so, she bypassed an echo.  She'll have another full work up before starting pre-K this fall.  Yep, my baby is going to school!

This spring, we were blessed to finally meet a few HLHS families we've known via social media, but never had the opportunity to meet in person.  We're thankful we live in Arizona where so many love to come and visit!

Jozie (North Dakota) and Zoe

Zoe, Will (Iowa), and Emmy
With the continued "spirit of living" narrative, we've spent some time up north, in Strawberry.

Papa and Emmy play badminton
Thus far, spring in Arizona is treating us well.  We have a few trips planned this year, mom has some speaking engagements lined up and dad is being admitted to the U.S. Supreme Court in June.  All in all, 2014 is another year to live well and be happy.
How could we not - with these two smiling, silly, and incredible little girls?!

May, our busiest time of year, will bring many more smiles.  Two birthdays, one anniversary (15 big ones for Caleb and I), and a Kindergarten graduation. 

As we near summertime in Arizona (ouch), please join us in our summertime mantra! 

Friday, January 10, 2014


The title of this post - one of Zoe's favorite most appropriate expressions - and my reaction when I saw our last update is from September 2013!!!  Yikes - someone's been busy!

I won't go into great detail about the last several months, but as you can probably imagine, life is good.  Zoe is flourishing with her Fontan circulation.  She's growing, slowing gaining some weight and becoming a bit too smart.  The mix of intelligence, feistiness and determination is both good and bad.  We're down to giving medications once per day and her oxygen saturations are in the mid-90s. Phew!

Emmy is doing incredible in Kindergarten.  She loves school and brings home perfect test scores almost weekly.  She's in a liberal arts prep school and I can just see it now - a UPenn Medical Student!  That Doc McStuffins sure is a good influence!

Caleb and I are staying busy between work, kindergarten (nightly homework) and play.  I've expanded my duties and am assisting the National Pediatric Cardiology Quality Improvement Collaborative, bridging my duties with Sisters by Heart.  It's really a great opportunity to unite parents and clinicians, to work together improving HLHS treatment and care.  Of course my full time job as a paralegal is priority, but I find fulfillment in both arenas, so I'm doubling up!

Don't you love how this post turned into a seemingly Christmas-card-esque annual wrap up?  Ugh, so not what I had in mind. 

I'll leave you with some family photos from our traditional year-end photo shoot with Blue Lily.  The setting - an auto junkyard.  You see junk? We see beauty!