IT’S 5K TIME…..OH HOW FAST A YEAR
GOES BY. Oh how fast days go by. How quickly life can pass us by if we don’t
make the conscious, consistent effort to slow down. It truly has to be a
self-disciplined, planned and prayerful commitment to slow this thing called
life.
Even then, it is still a vapor. (James 4:14)
Each year Care About Cranio 5K has
supported a need dear to our hearts. This blog documents each year and its
purpose. Last year was extra special. We were able to give over $7,000 to our
precious friends, The Pearson Family.
Ami had been a friend to me for over 10
years and I watched her fight cancer for almost 3 years. She was the toughest,
most caring and brave woman I have ever met. She completed the 5K “mommy track”
last year and 4 short months later met our Heavenly Father. She loved life and
lived it to the fullest. She left behind a precious husband, 2 beautiful girls,
many friends and precious family.
I know she would be excited about giving to
another brave fighter this year!
Falan was one year older than me in
school. However, her parents were at my birth so our story really began as
infants. Then, we rode the same bus route in elementary school. I remember spending
the night with Falan then and watching her take care of her baby sister, Kayla.
She was a little mother hen while cleaning house and cooking too. I was amazed
by how much she knew about “grown up stuff”. I never make a pie merengue
without thinking about her because she taught me how when we were maybe in 4th
grade!!
In 2014, Falan passed on her bravery,
strong will and determination to a beautiful little girl who was born on October
3rd, 2014 at 28 weeks gestation, a full 3 months before her expected arrival on
Christmas Day. Sophia Grace weighed in
at 2 pounds and 6 ounces.
Shortly after Sophia was born she was
diagnosed with a condition known as TEFEA (tracheoesophageal fistula esophageal
atresia), which is an opening between the trachea (windpipe) and the esophagus and;
her esophagus was not attached to her stomach.
This affected her ability to be adequately oxygenated, so the decision
was made to transfer to Children’s Healthcare of Atlanta (CHOA). She then underwent emergency surgery to
correct this opening. This would be the
first of MANY surgeries to follow during her 8 month stay at CHOA. In addition to her fistula, Sophia’s
esophagus did not connect to her stomach. A feeding tube was placed in her
stomach so that she could receive the nutrition needed to make her grow
stronger. A couple of weeks into her
NICU (neonatal intensive care unit) stay Sophia developed a bleed in her brain. Due to the bleed Sophia developed hydrocephalus,
a condition where spinal fluid can’t drain from the brain properly. This required multiple brain surgeries and
ultimately the placement of a ventriculoperitneal shunt that drains the extra
spinal fluid into her abdomen.
Santa came to see Sophia on her Christmas Due Date....she had been in the NICU since October!
The hope was that with
time the ends of Sophia’s esophagus would grow close enough that they could be
connected. After months of letting her
grow it became evident that a more aggressive treatment would be needed. Sophia underwent a procedure that involved
attaching thick sutures to the two ends of her esophagus and slowly pulling the
sutures a little each day so that the ends would grow close enough to be
reconnected. During this time Sophia was heavily sedated, but after a few weeks
Sophia underwent reconnection surgery. One of the common conditions that is
usually seen with Sophia’s malformations, is a condition known as
tracheomalacia, which causes her airway to be floppy and hard to stay
open.
Despite all the setbacks that
Sophia faced, she was able to come home from the NICU in May 2015. The next several months were filled with
doctor’s visits and several surgeries aimed to improve her reflux and dilate
her esophagus. In fall of 2015, Sophia
became sick with a virus that for most people would not have been a big deal,
but for a little girl with a not so great airway, it was a huge problem! She spent several very tense months in the
PICU (pediatric intensive care unit….since she was now too big for the NICU). Thankfully, Sophia was able to come home on
minimal oxygen support. In early 2016,
Sophia underwent surgery aimed at correcting her trachea so that she could
begin speech therapy and eat by mouth instead of through her feeding tube. While the surgery was uneventful, once at
home recovering Sophia slowly began to require more and more oxygen
support.
On April
30th, 2016 Sophia suffered a respiratory arrest at home requiring CPR,
intubation and an emergency flight back to CHOA. She spent several weeks in the PICU. Sophia
was then transferred from PICU at CHOA to Boston Children’s Hospital where she
underwent surgery that will hopefully keep her airway open so that she can work
on physical therapy and learning to eat!
They attached her airway to her spine
but that didn’t open her airway as much as she needed. Surgeons went in
again this time from the front and
attached her trachea to her sternum, moved her aorta and a few other vessels in
her chest. They also noticed she had a porcelain gallbladder and removed it.
Sophia came home on July 23, 2016 on no oxygen and not attached to any tubes or
wires for several hours a day! She will have to go back to Boston for a
tethered cord repair and a laryngeal cleft repair. She is able to try to take a
tablespoon of baby food three times a day. This is the first time she has ever
been able to try anything by mouth! She is working on crawling!
A few words from Sophia’s mom “Sophia
has had to overcome more obstacles in her short life that most people will have
to in their lifetime. However, through
it all she has remained the bubbly, smiley little girl that lights up any room
that she enters! It is unbelievable that
such a tiny little girl could touch the lives of so many! To say she is a fighter would be an
understatement! Soon after she was born,
we had t-shirts printed with a motto that Sophia continues to live by every
single day…..Though she be but little, she is fierce!!! We are blessed that God has chosen us as her
family! We are also humbled and in awe of the support that our community has
shown during this journey. We often joke
that Sophia is everyone’s baby girl. The truth is she has touched so many that
everyone feels invested in her success.
There are no words to express the gratitude we have for everyone’s
generosity. We have been surrounded by
love and prayer! We do not look at her
as a pity story, but rather a way for God to show us his grace through a sweet
little girl named Sophia! Thank you all
for being a part of this amazing and often overwhelming journey!!!!”
One of the purposes of this 5K is
to remind Emmy of all the prayers lifted up for her by people all over. The
same is true for precious Sophia! So many people have prayed for this baby and
God has not only heard the prayers but He chose healing. At our first annual
5K, we circled around another cranio baby and his family in prayer.
Year two,
we laid hands on Ami.
This year, I am asking you to come, be still, meet this
precious one and her family, pray over her and slow down enough to give. Give
generously. Oh how I can’t wait to see how God uses you through this event and
uses this event to be a blessing not only to Sophia but everyone involved. He
is a GOOD GOOD FATHER!!! Please come and share His Love, Praise His Name with
us this day!!! What beautiful blessings we have to be thankful for and I know
Ami is right beside Jesus cheering us on!!
It’s a fun morning full of prizes!
By participating you get to run/walk with friends in a cute t-shirt, get snacks
and prizes as well as the joy of helping others! Checks this year are tax deductible
by pay to order of “Envision Wadley”. Please contact Samantha Baggett for any
further information (334.863.0098 or skfbaggett2010@gmail.com)
DONATIONS CAN BE MAILED TO SAMANTHA BAGGETT - PO BOX 92 WADLEY, AL 36276
