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