Saturday, September 28, 2013

Whirlwind...

The past eight days have been a whirlwind, to say the least.  Since Friday of last week, we've traveled between two different states (and one district), putting over 1,100 miles on our new-to-us car.  (Yes, the car buying saga is over - thank you Jesus!)

I eluded to the craziness the last time I posted, and now here we are on the other side of half of it.  Ethan's appointment with his cardiologist has come and gone and we spent all of 42 hours on our trip to our nation's capital - both of which were pretty dang good.

The news from Dr. I? Ethan's heart continues to remain strong and healthy.  The pressures are stable and the conduit isn't showing any signs of narrowing.  Praise God! I believe the pressure gradient was around 50 mmHG, which is a only a minimal increase from March.  It's not ideal, but it's stable, so we'll take it.  The pacemaker, though, is the cause for a three-month return visit instead of six.  It has somewhere between nine months to a year of battery life left, so it's time to start keeping a closer eye on it.

The million dollar question is if the battery and conduit will need to be replaced around the same time, but, at this point, only time will tell.  We'll head back in December and most likely have a much more specific "game plan" conversation then.

God's got this, though.  I just know it.



So, about D.C.

If you live in North Carolina, it's likely you've seen our family in some form of media over the past few days.  I'm not gonna lie - the cameras made me cringe.  But, the Lord totally calmed my heart and allowed me to share Ethan's story clearly and, hopefully, effectively.  Testifying at the hearing was not like anything I could've imagined! It was such an honor to be there representing families all across our country.


If you'd like to check out some of the coverage, I've compiled a few links for the "baby book".  The news clips are just a couple minutes long, but being in the TV studio room for a couple of them was cuh-razy.  If you're not interested in watching all 90 minutes of the actual hearing, my testimony and a couple follow-up questions start around the 43-minute mark of the link below.  For the record, I personally think the entire hearing was fascinating!

U.S. Senate Committee Hearing:
http://www.help.senate.gov/hearings/hearing/?id=2c298486-5056-a032-5257-fab6c007df6c

News14 - D.C. and North Carolina:
http://www.youtube.com/watch?v=ewXw2JRnhNc

WWAY - Wilmington, NC:
http://www.wwaytv3.com/2013/09/26/sen-kay-hagan-holds-hearing-to-show-importance-of-newborn-screenings

WSOC - Charlotte, NC:
http://www.wsoctv.com/news/news/federal-funding-newborn-screenings-set-run-out-nex/nZ8Lk/

WRAL - Raleigh, NC:
http://www.wral.com/news/local/politics/video/12928724/#/vid12928724

News and Observer - Raleigh, NC:
http://www.newsobserver.com/2013/09/27/3233351/raleigh-mom-tells-senators-infant.html

It was an experience that won't be forgotten, that's for sure.  I'll share more photos from our adventure later, but I'll leave you with these two tonight...



Thanks for all the support and love!


3 comments:

Sherry said...

Go, Joye! I am so proud of you all! You looked beautiful and so poised and professional as you spoke! I hope and pray it will do the trick to show how important this law is. Way to go!

Rebecca Stanley said...

I'm totally proud of you! :-) also, I adore your cute little one in his vest and suit and everything. Glad for good news from the cardiologist too!

Tara said...

Way to go Joye! That is awesome! Will continue to pray for all your upcoming plans and the adoption - and great news on the cardio visit - love the stable pressure reports ;)

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