Monday, December 30, 2013

Happy day to us!

13 years, BABY!!
Happy Anniversary

Friday, December 20, 2013

Thursday, December 5, 2013

Glorious Unfolding

Steven Curtis Chapman's newest album, "Glorious Unfolding," has captured me.   The truths of Hope and redemption we have through Jesus shared here have helped to bring peace and joy on some difficult days for me this year.

Deep encouragement for an eternal perspective in this life.  I Highly recommend it!

Tuesday, November 19, 2013

Angels in Uniform

NICU nurses…

We. Love. Them.

Sunday, November 17, 2013

No Shave November and the Monkey Tail

(Abby is briefly in this video)

November… a beautiful season of color, cool weather, thoughts of Thanksgiving and… No shaving!

Patrick has faithfully "celebrated" No Shave November for years, much to my dismay.  This year he spearheaded a fundraising and team building event at work to raise money for a worthy cause!  Ambucs serves people with disabilities by providing adaptive bikes, individually fitted for each person's needs.  Abby has one!

A large group of NASA employees agreed to grow beards this month in order to shave a crazy design at the end… and wear it all week!  

Designs were chosen for people to vote for by placing money in the jar of their desired (least embarrassing) look.  The money collected will go towards a very special bike for a very special child!

Abby on her AmTryke
The choices were Federation Standard (clean shaven), Fu Man Chu, The Bat Man, Chin Curtain, Monkey Tail and the Franz Joseph.

The guys raised enough for 6 BIKES (>$2100)!!  And the Monkey Tail won.  

So, for the next week, the guys will sport this look.

The Monkey Tail!
The kids are big fans!


Abby has had a few GOOD days!  Praise the Lord.  She is Sleeping at night and having awake times during the day when she is Content!!  This is huge.

Since Tuesday was so rough for her, we are still giving extra seizure meds until she has her VNS activated.  This seems to be helping.  Thursday morning we go to have it turned on!  

Praying this next step will give her more seizure relief and allow us to come down on some of her medications.

Today we are having a Girl's-Chill-Out morning!  Daddy took the boys to church and we are having a quiet morning together.  So nice.

You can see her "caterpillar scar" as Josiah calls it… one of two incisions.

Saturday, November 16, 2013

Third Culture Kids

I've had a few conversations lately that sparked my thoughts on this subject.  Typically something I ignore, it's part of who I am.  Being way too comfortable in an airport… yup.  I am.  Speaking a strange mix of languages growing up.  Yup.  Dreading good-byes and not really knowing where Home is…

Just a few things Third Culture Kids have in common.

So Where's Home? A Film About Third Culture Kid Identity from Adrian Bautista on Vimeo.

Tuesday, November 12, 2013

VNS replacement surgery

Yesterday Abby had her Vagal Nerve Stimulator replaced.  

Surgery #… we've lost count.  Somewhere close to 20. 

We found out it was broken at a routine neurology check up… ironically, also the day she had her status (very long, can't be stopped at home) seizure in September.  

The surgeon was concerned it might be difficult to remove all the coils around her nerve.  Sometimes scar tissue gets entangled with the equipment, making it almost impossible to cleanly and safely remove it.  Thankfully he was able to free the nerve and remove all of the old VNS and leads!  Now she has an upgraded VNS, complete with new technology and a brand new battery.

The first one lasted almost seven years, which was pretty good I've been told.
First VNS implant… 4 years old

2007-  She's grown so much since then!

The past month has been hard on Abby.  Her seizures have been very hard to control.  We've stopped medication, added meds, adjusted doses and spread them out over the day in hopes of keeping the seizures to a minimum.  

During the process she has gotten her days and nights confused, awake at 2 am but sleeping most of the morning.  It's been frustrating to say the least.  Not to mention the seizures.  We know now how much the VNS was helping her!  She started having the old myoclonic (looks like a startle) seizures again, hundreds a day.  She has been so upset by them!  I can only imagine.

She did well in surgery!  They kept her in recovery an extra hour due to her erratic heart rate.  One minute it was uncomfortably low, the next jumping above 120's.  Her nurse was very attentive and didn't take us to the floor until she was comfortable with everything.  

In recovery

Today has been rough.  She started having seizures in the middle of the night and has continued the pattern through today.  I've been on the phone with the surgeon's office and the neurologist.  After over 15 bigger seizures today we finally resorted to giving her emergency medication tonight.  No fun.

Hoping we don't have to take a trip to the ER.

Going home!

Friday, November 8, 2013

A Special Cuddle!

Baby Rachel and her adoring Aunt Patty!
(weighing about 8 lbs)

The big boys got to visit Rachel soon after she came home from the NICU... through the glass!

Precious miracle Baby

Tuesday, October 29, 2013

Gotcha Day- one year!

Referral picture

Yesterday marked the one year anniversary of Jack Nathan's "Gotcha" Day.  It's hard to believe so many days have passed since we first held him.  Those adorable eyes and that precious smile... I'll never forget it.

So much happened on that trip, it's difficult for us to think about it and remember all the details.  For this occasion we just want to remember the blessing that we received in Jack and the Lord's faithfulness in those first few days together.

What a difference one Year makes!

Today- wearing his Chinese outfit!

2 years 9 months old

Thursday, October 24, 2013

Soft diet continues

Jack, enjoying some soup with rice.  Mmmmm!

Tuesday, October 1, 2013

Palate repair recovery

Today has been a good day!  Jack woke up this morning, sat up in bed and drank some juice.  He kept signing "eat" but only took a few tiny bites of his pureed breakfast.  Later he managed to eat a popsicle.  

His doc came by early this morning and planned for us to stay another night.  By this afternoon Jack was doing so well drinking fluids and taking his oral pain meds Dr. R said we could go home!  We are all really glad to be home and sleeping in our beds.

Jack is such a good little patient!  We sat together in his crib all morning, playing with legos and watching cartoons and the food network.

The Elmo balloon was his main comfort item.  Patrick got it for him when he was so upset after waking from anesthesia and hurting.  He never let go of that balloon, even in his sleep.  The nurses commented on how funny he was, clutching his balloon.  He even tried to feed Elmo his drinks and pudding!

packing up to go home

We will be enjoying having Daddy home for a while... he was furloughed today from work.  

Monday, September 30, 2013

Cleft Palate Repair

Happy in pre-op

 Today was Jack Nathan's BIG surgery day!  We woke up bright dark and early to head South to Children's hospital.  He was the first case scheduled this morning, so that was helpful.  I don't think he had time to feel hungry.  

They took him back to surgery at 7 am sharp.  We got 3 update calls during the morning, all saying he was doing just fine.  The Doc finally came out to talk to us about 11:30 to say all went well, although his palate was very wide and difficult to repair.  He felt confident it will work great once all is healed!  Praise the Lord!

We made it to our room on the burn unit around 1 pm with a very tearful, sad little boy.  The staff has been great at keeping his Morphine coming as needed.  He has slept on and off all afternoon/evening, with a few tearful, wakeful spells.  He's getting breathing treatments to help him breathe easier due to all the swelling in and around his airway.  Apparently some kids have trouble with their airways after this surgery... so far so good for this tough guy!

Patrick headed home for the night and we are mostly tucked in until the next pain med is due.

Thanks for all of you who prayed for this little one.  He's been through a lot and has more to come in the future.  But it's all positive steps in the right direction!

Saturday, September 14, 2013

Home again

We enjoyed a relaxing afternoon at home as a family watching the ball game.  It was like a breath of fresh air!

Abby is tucked into the "sick bed" in our bedroom for the night with Tylenol on board for her fever.  We can tell she is happy to be home... no more monitor wires, IV's or probes.

PICU souvenir:  Bipap mask

Activity for bored football fans