Gianna F.
Welcome Friends!
Birthdate Is 02/25/2002
Main Diagnosis Is Epilepsy
THEME: My Little Pony with Flowers & Butterflies
On February 25, 2002 our little five-pound miracle Gianna Cecelia was born.
Arriving Six weeks early and the lone survivor of triplets, our beautiful angel
brought us the true happiness that every parent prays for. At six-months-old,
Gianna had her first seizure. Initially we were told by the pediatrician that it
was nothing—that she had simply been moving her eyes in an unusual way—and that
we didn’t need to worry. I instinctively knew something was wrong, so we took
Gianna to a neurologist. After a quick EEG, the doctor said she was fine; but
not a minute after we got home, she suffered a grand mal seizure. We were panic
stricken when we were finally told that Gianna had epilepsy.
The feelings of joy Gianna had given us each day were now mixed with feelings of
guilt. What did we do? What could we have done to protect her from a life with
epilepsy? We took the video camera and began chronicling what would become a
journal of Gianna’s life. We kept records of every diet, every medication, and
every combination of drugs prescribed. We kept a log of every bite of food she
ate, thinking maybe a certain food was to blame. Once the guilt passed and we
came to our senses, we realized there was nothing we did—or didn’t do—and
nothing we could have done to prevent it. For many children with epilepsy, there
simply are no answers.
Gianna has gone on to endure countless seizures and side-effects from
treatments. Each day, she faces a number of challenges as her little body fights
the four medications she is currently on. For someone so young, the long days of
occupational, physical, and speech therapies can be grueling when coupled with
the pressures of her Kindergarten and first grade studies. We do our best to
teach her to become social and make friends at school.
We had an incredible year when Gianna was about three—almost twelve months
passed with relatively few seizures. The episodes she did have were only at
night, and for the most part she had control during the day. Even so, ever since
she was a baby, Gianna has taken up permanent residency in our bed—it’s the only
way we know whether or not she is having a seizure.
In 2006 we were blessed with identical twins. In the beginning, those feelings
of guilt returned—how could I take precious time away from Gianna when she needs
me so much? In time, the twins have helped me realize that I need to let go a
bit. I’ve learned to give Gianna more freedom to do things at her own pace,
despite how hard it is to watch her fall over when she is trying to put her
pants on, or to remind her to wipe her face when she is covered in food. It
still breaks my heart to watch as my two baby daughters watch Gianna having a
seizure, yet it almost seems that they understand. They watch over her and give
her sweet little kisses when the episode has passed and she has fallen asleep.
Recently Gianna’s daytime seizures have returned, so we are once again searching
for answers. We are afraid to leave her alone in her room. We cannot leave her
by herself since these seizures are so sudden and so quiet. We call out her name
a thousand times a day to check if she is okay. We wonder if what we thought
were side-effects from medications have really been seizures.
Gianna has gone through countless doctor visits and hospital stays, batteries of
tests, and seizures too numerous to count. Six years later, we still have no
answers for what causes the attacks, or how to stop them. After seeking yet
another medical opinion, we are currently looking at different options for
Gianna. Could she be a candidate for surgery? An implant? Or other medications?
We will wait and see, and continue to hope that one day Gianna will be seizure-
free.
Thank You From Gianna’s Mom
I cannot thank you and all the others enough for all the hard work that went into this beautiful quilt.
Thank you all for making the world a little easier for all of us with children that are sick.
You are all truly amazing.
God Bless.
Wendy
Biography
Quilt donated by .."Lets Do it For the Kids"
