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Sarah Ann Zicafoose

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Welcome to our daughter's Web Page. It has been provided to keep family and friends updated about our sweet and wondeful little angel girl.

Sarah Ann Zicafoose, born June 10th. 2003. Her twin sister Hannah was born just 5 minutes before her. The girls were born 4 weeks early. Sarah weighed 3 pounds 4 ounces and Hannah 3 pounds 14 ounces. It was such a joyous day in our lives. They were the most beautiful babies I had ever seen. Because they were early, the girls had to stay in the hospital for 2 weeks. It was a sad day when we could not take them home with us when it was my time to leave the hospital. Darin and I were there everyday. So were many members of our family.

Right at the very beginning, we were all noticing that there was something a bit different with Sarah. We could not put our finger on it. We just thought because the girls were preemies, that maybe she just needed more time to grow and develop. As time went by we were noticing distinctive differences beteeen the girls. At 2 months old Sarah started having Reflux and was throwing up 4 to 5 times a day. We took her to the pediatrician and he gave her Reglan to help her with the reflux. One of the side effects are seizures, which she started having. We called her doctor over and over. Basically he started writing us off as being extremly paranoid parents. We did not want to mess around with this so we immediately found her another doctor. Once the girl's new doctor heard of her having these seizures, he wanted us to keep him closely informed.

In October of 2003, she was 4 months old, the seizures were increasing every day and lasting longer and they were getting stronger. Then on Saturday, October 11th. 2003, Sarah started having very, very severe seizures, lasting at least 15 minutes at a time. Darin quickly videotaped them. We then called her doctor and he immediately said to take her to the emergency room. The doctor there saw the videotape and actually witnessed a seizure. He immediately put a name to this and called it "Infantile Spasms". We were just heartbroken, devastated and just scared to death. She stayed at the hospital for 3 weeks. They ran ever test imaginable and tried so many different kinds of drugs. Nothing was working.... nothing was taking the seizures away. One of the tests was an EEG. There it showed hypsarrhythmia. (abnormal, chaotic brain wave patterns) Her neurologist wanted us to take her to UCLA to see the neurologist specialist there for an evaluation.

It was finally determined by Dr. Mathern, the pediatric neurological surgeon at UCLA, that in order to get rid of the seizures, she would need a hemispherectomy. (The surgery that she had is where they removed some portions of the brain and then they completely disconnected the left from the right. That way, the seizures cannot cross over to the good side which is the left side.) Explained by the doctor, this would be her best shot in having as normal of a life as possible. With out the operation, the seizures would increase her chances of dying by 1% every year. So at age 10, her chances would be 10% of dying. At age 20 her chances increase to 20% and so on.

As shocked and scared as we were, we had no choice but to put our trust in these doctors and in GOD and give her the chance she so deserved.

So, on February 19th. 2004 our little angel went in to surgery that lasted 14 hours. We had literally our entire family by our side. Thank GOD for all the support we had. The stress was so overwhelming that I came down with a horrible cold and was so sick that I was not allowed to see her for 3 days after the surgery. I was devastated. But I had to play it safe. Her Daddy was there for at least 18 hours a day on those 3 days and so was the family. Once I was able to see her... so many emotions swam with in me. All I wanted to hold her and comfort her sooo bad. I wanted to cry for her. But she was still soo fragile and recovering. All we could do is be by her side and hold her hand. Even with all the bandages and wires going everywhere... she still was soo beautiful and sweet. Then 10 days later she needed to have a shunt, which was another surgery.

Finally we were discharged around the first of March and headed back to Arizona.

Now here it is…… a few years later. It has been soo trying, but now we can see soo much light and brightness in her. She is a very happy girl. She is a very strong and determined little girl. We have had some very rocky roads, but seeing her do all she can now is soo worth it all. As hard as it got, we would do it all again in a heartbeat to give her the life she soo deserves. She also has been SEIZURE FREE since the surgery. She still is on seizure meds and the doctors would like her to continue to be till she is 6, just to be on the safe side. Sarah can now sit on her own, sit up on her own, lies down on her own, she rolls around, scoots, reaches out to you, smiles and laughs. She wants to walk so bad too. Sarah is even progressing very well in her therapies.

WE ARE TRULY - TRULY BLESSED!!




Diagnosed Conditions:
Infantile Spasms
Cortical Dysplasia
Epilepsy
Cerebal Palsy
Hemi Parasys
Missing Right Hippocampus
Nystagmus


Surgeries:
Right Functional Hemispherectomy
Feb 2004

VP Shunt
March 2004

Feeding Button
September 2004


Mommy's Poem to Sarah

Sarah, you’re my angel, you’re my light
You’re the reason my heart and my soul is just right.

You have shown me the meaning of true love,
An unconditional love, a love I am so proud of.

I will forever be a part of you and forever you’ll be a part of me
I will always be there for you, something that just will always be.

You and your sister are also a gift to each other,
a gift that will always be treasured,
You two have a love that is so strong, so special,
so bonded that it will last forever.

You are my strength when things get hard or
if I have a bad day,
All I have to do is to look into your sweet eyes and then
I know that things will be ok.

You have taught me so much about myself,
You have shown me how deep love goes,
You have help me see how unconditional it is and
how far I still have to go.

And because of you,
I have found a love that few ever know.

You have shown me how to be strong and how to
appreciate the very smallest things,
I’ve become a much better person because of
the daily joy you bring.

I will always and forever love you, no matter
where the road of life takes us to,
You are my angel, my strength, my wisdom, my light
I will always and forever be true to you.

You are a part of my soul, a part of my
being, a part of my heart,
We have a special bond, a special gift where
we will never ever be apart.

Sarah you’re my angel, you’re my light,
because of you, you are the reason my world is now so right.


Love Always,
Your Momma



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Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms,waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?
The are sitting patiently, in hospital rooms as their child recovers from yet
another surgery to lengthen hamstrings or straighten backs or repair a faulty
internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm.
They are sitting at home with their child because family and friends are
either too intimidated or too unwilling to help with child care and the state
agencies that are designed to help are suffering cut backs of there own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled child alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant
10/15/96

Journal

Tuesday, March 11, 2008 4:32 PM CDT


Hi Guys!
I just got back from the audiologist to put tubes in Sarah's ears and to test her hearing. She did need tubes in both ears and here is the heartbreaker..... Sarah hears great in her left, but she is completely deaf in her right.
Looking back, now it makes sense. Remembering now, how she turns her head when she hears a noise and sometimes does not respond to you right away depending which way her head is turned.
It is strange to us because you would think that it would be her left side that is affected. She does not cry tears on her left, and her left side is partially paralized. So I have placed a call to the neurologist and we are going to look at her newborn records to see if they showed anything going on with her hearing. We honestly do not remember that being an issue. Later on down the line she can have an hearing aide placed.... but for now we are just going to do all we can for her.
Well, she is resting now and I have to got get her fed here soon. She has not eaten all day and I am sure is super hungry.

Love to all!
Vicki



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Hospital Information:

UCLA Medical Center
10833 Le Conte Ave
Los Angles, Ca. 90095
(310) 825-9111

Links:

http://www.neurosurgery.medsch.ucla.edu/Programs/PediatricEpSurgery/PedEpSurgery_Research.html   UCLA Neurosurgery
http://www.thebarrow.org/   Barrows Neurological Institute Child Neurology
http://www.laurensinstitute.org/   L.I.F.E (Lauren's Institure fro Education)


 
 

E-mail Author: thezfamily04@msn.com

 
 

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