Friday, July 18, 2014

Good-bye to Sony...

It seems like the last day of my career as I know it... I've been working in the video game industry since 1998, sixteen years!!
Though I have not been in to work for the last five months, when I walked into my building today it felt like I was just there yesterday morning.  Drop off my purse, log on, go grab my coffee, sit down and start checking email.  And it's the best day of the week, bagel & donut day.  I guess that's how it feels when you've spent half your time somewhere for the last 8 years. The days (and sometimes nights) at Sony Online have meant a lot to me. Time here gave me skills that I am proud of and friendships that will last.  This company and it's management have been a huge blessing to me.
February 11, 2006 - July 18th, 2014, thank you SOE!

My cleaned out desk & chair. I can't imagine any one
else's butt will put the time in that mine has on it.

Friday, July 4, 2014

The Home Stretch

Well the last time I updated the blog we had been in the hospital for two weeks. At the end of this month we will (hopefully) be checking out of the hospital after a 5 month stay.

The current plan after returning home will involve 6 out patient therapy visits a week.  We have a ways to go to full recovery, physically and neurologically.  But with the amazing way she has recovered this far, I have faith that those therapies will be a temporary part of life.

As heart wrenching of a road as this has been, there are many things I'm thankful for:

-To God, for bringing miracles to heal Naya when all seemed hopeless, and allowing her to stay on this earth with me.
-My mom, dad and sister for their constant sacrifices and presence here in the hospital with me so that I did not have to try to do this alone.
-Auntie Ryan & Aunt Bunnie for taking multiple trips from Washington to come lend help.
-To Sianne, David, Melissa, my family, friends and church that have always been willing to jump to help us at any moment. You know who you are!!
-The 842 people on my facebook group "Naya's Heart Quest", as well as the local and long distance friends and family that have sent messages, gifts, money, encouraging messages, and MOST of all, prayers.... pleading to the Lord for my daughter's life and recovery.  And I know those people have brought in prayers from THOUSANDS of other people who have been praying for her regularly all these months.  It's been such an astounding thing to me to know that so many people have a heart for my daughter and have gone to bat for her, even so many we have never met.

I know pictures and videos would best show the transformation that Naya has made in the last 5 months. But the few I have taken in the earlier days, I often deleted because they were too painful of a reality to face. And I just don't feel comfortable posting the photos of extremely desperate times that I do have.  But here are a couple I've posted already that do show the change that has occurred with God's healing hand.

Monday, March 10, 2014

2 Weeks

We've been here at Rady's for 2 weeks as of today.  In the high level ICU. We'd hoped to go to the step-down ICU two to three days after surgery, but it's been a bumpy recovery.
The last 2 days have been pretty great though.  Naya's awake and getting back to her old self, and has started eating solids.  Yesterday she even had a good belly laugh, which was beautiful to see.
The prayers of friends & family are carrying us through this experience, and I know God has great things in mind for this little heart warrior's future.

Wednesday, February 26, 2014

Waiting for Sleeping Beauty to wake...

Naya's Fontan surgery on the 24th went well.  The doctors have been juggling little complications here and there that have left her sedated since then. But she should be waking up shortly....

Tuesday, January 21, 2014

One Year Together!!

When I look back at the pictures and video from one year ago today, Naya and I have both come so far and changed so much.  I'm so thankful for her, and the way we have become a part of each other's worlds. Even with the difficult times, it feels like it's been so seamless. Which is really such a miracle.

This little shy girl had so much spunk and sass inside.  It didn't take too long to see that our personalities match perfectly.

Tonight we celebrated our first 'Family Day' with some delicious Chinese food that Rose made, and a cake that Naya picked out.  I gave her a little present from her home province that I bought while we were in China.  I brought home a gift for every year until she's 18, so that is fun to bring out and talk about.  
I've got a picture of all of us together somewhere that I'll have to add.

A dinner-time song courtesy  of Naya.  Apparently she learned it at school:

And Rose caught this moment from that I wanted to re-share:
Tonight we turned on the videos of the first moments we had with Naya.
Naya:  Why I look scared?
Sarah:  Well, you had just met us.
Naya:  (laughing) I not scared any more!!

Thank you FAMILY and FRIENDS for being there for us this last year. And I know you will continue to be.
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Here's a video that I posted a while back, from our first couple weeks together--

Thursday, December 26, 2013

Naya's First Christmas

Christmas was awesome.  Look at this beautiful kid-- I am so fortunate to be the person she calls mama.

Christmas Eve was the regular craziness with about 40 family members, lots of food and wine, singing Christmas songs and opening presents. As we sang she danced around in the middle of our circle with a toy microphone and some jingle bells.  She's so clearly at home and in love with my family.

Our family has grown by 2 this year!
The Insanity
And with a kid in the house there's no more sleeping in until 10 on Christmas morning.  She came downstairs to stuffed stockings general christmas spirit.  It was so sweet to see how excited she was to give each of us the presents she'd made, and so fun to watch her open hers! An awesome new experience for me.  
Christmas morning
My 2 girlies
It's very interesting to see how a 5 year old can start grasping these abstract ideas about Christmas and Jesus and God.  Mostly though she was obviously just having a blast with all her family and cousins, presents and Christmas cookies.


In other news-- Naya's Fontan heart surgery is scheduled for February 19th, and I'd love your prayers for a smooth surgery and recovery.  She will be in the ICU at Rady's Children's Hospital for 2-4 weeks.  So any ideas on keeping a bed-bound child entertained would be much appreciated! 

Merry Christmas and Happy New Year!!

Wednesday, November 6, 2013

Garden Gnomes & Doctor Visits

I wondered what Naya would think of seeing people walking the streets in costume. It's funny when you realize how hard it is to explain American events to someone who has no idea about them. It makes us sound a little insane. "Yes, I'm going to dress you up in a costume, and you'll walk around on the streets asking for candy. And then next month we're going to bring a tree into our house and put shiny things all over it, and stick socks that are too big for anyone to the wall." In any case she really had fun going to a church harvest festival, and going to get candy from a couple people in the neighborhood. And I had to dress up as a peacock too....I usually start planning my costume a year in advance, I just love dressing up. I can't stop.

Doctor Stuff.
After another echocardiogram and cardiac catheterization, I met with Naya's cardiac surgeon at Rady's last month. We discussed the conclusions their team has come to, and all the risks and benefits of several possibilities for me to consider. Her diagnosis is mitral atresia with double outlet right ventricle, moderately hypoplastic left ventricle, with multiple ventricular septal defects.  A mouthful of words that I've slowly figured out the meaning of. 

The doctors have decided that she will have one surgery, a Fontan, versus breaking it into two separate surgeries with the same outcome.  The question is when.  At the moment Naya's heart is pumping twice as hard as a healthy heart, because one ventricle (versus 2) is pumping to both the lungs and the body.  So while she doesn't have any other symptoms, and seems generally healthy, the work load will take a toll on her heart over time.  If we wait, it may wear her heart out.  

The downside of performing the surgery now is that as it is not a long term 'fix' for her condition, it brings along eventual side effects, needs for medication, and other potential serious problems.  It sucks to start the clock on those things, when she's living as such a healthy child right now.

What it comes down to is no obvious right answer, but it seems that the best choice is for her to have her surgery in the near future, and take the work load off of her heart.  We're going to talk again after the holidays, but are tentatively planning for her open heart surgery in February of 2014.

So please keep Naya, her doctors, and myself in your prayers for wisdom and direction.  It can be hard to think about the difficulties she may have ahead of her, but God has truly given me a peace, and a belief that she is going to be okay. For a long, long time. 

I'm claiming this one for Naya,
"Because you love me, I will rescue you.
    I will protect you because you know my name.
When you call to me, I will answer you.
    I will be with you when you are in trouble.
    I will save you and honor you.
I will satisfy you with a long life.
    I will show you how I will save you."
Psalm 91:14-16

And now, a moment of silence for my high heels of Halloween costumes past. This was my first year for felt like somewhat of a betrayal to who I am.  But to be honest it is probably time, I abused my feet for the last 15 years, and they deserve a retirement.