Madison_story

Madison's Story

   Our sweet little princess Madison was born on August 26, 2006, our third child but our first girl. After an
uneventful, normal pregnancy her anticipated arrival was followed by and eight day stay in the Neonatal Intensive
Care Nursery for aspiration pneumonia. We were so excited when she was ready to come home and join us and her
older brothers. The first month she was home Madison slept virtually all the time and was a very poor feeder. It was
then that I started questioning if she was OK. When she was 5-6 weeks of age I realized Madison was not tracking
or responding to bright light, she did not appear to see at all. When she was 6 weeks of age she had her first
seizure. I remember just starring at her thinking surely she did not just have a seizure!! As the weeks went on she
continued to have between 1 and 20 seizures a day. These seizures consisted of her arching backward, getting stiff,
and tongue thrusting and lasted for only a few seconds at a time. We finally got her seizures diagnosed after much
persistence on my part and a week long stay in an epilepsy monitoring unit at Baptist in January of 2007. Madison
was started on Keppra (an anticonvulsant) at that time to help control her seizures. She had also been diagnosed with
cortical visual impairment.

In March 2007 we transferred our care to Duke University Hospital. Madison had begun having two other types of
seizures (grand mal and convulsive seizures) along with her first type. These were very frightening because she would
scream out like she was in pain at the beginning of the seizure. It stopped us dead in our tracks and always made me
cry. As the summer of 2007 went on Madison’s seizures worsened in frequency and length. By the end of August we
felt we were losing the battle of controlling her seizures despite being on three different seizure medicines. It seemed
she was either in a drug induced stupor or she was seizing. Not only was she having all of these seizures she also had
not met any of the first year milestones. She was not holding her head up, rolling, sitting, playing with toys, standing,
and was not able to eat solid food. Madison had been receiving physical therapy, occupational therapy and vision
therapy in the home.   At this point Madison had been tested for multiple genetic, chromosomal, chemical
abnormalities that could cause her condition but none came back with a positive result.

As she continued to worsen, with up to 30 notable seizures a day some lasting over 30 minutes, we decided it was
time to take her somewhere that had more experience in dealing with children like her. We did a lot of research and
decided on the Mayo Clinic in Rochester, Minnesota. With the blessings and prayers of her neurologist from Duke,
we traveled to the Mayo Clinic at the end of October of 2007. There we were blessed with a very caring and
intelligent neurologist. After 48 hours of EEG monitoring (brain wave) he diagnosed Madison with a severe seizure
disorder as well as infantile spasms which are a type of seizure that causes brain swelling and regression in
development. He told us that she was having over 100 seizures a day that were not visible to us. Her brain was in a
constant state of chaos. It was also then that we learned our precious angel would probably never sit, walk, talk, or
develop past that of a 4 month old and without an aggressive treatment of steroids may not live to see the age of two.
We were devastated and heartbroken as our dreams for our daughter crumbled in front of our eyes. We regrouped,
prayed, and of course went forward with the steroid treatment. Fortunately the steroids stopped her infantile spasms
and seemed to quiet her brain some and we started on a new seizure med which finally got a handle on her 30-40
minute seizures.

As we entered into the new year, Madison seemed to be doing a little better. She was able to track her toys and
seemed to be seeing us on a good vision day. She was starting to sit, not unassisted, but she was sitting for a few
seconds and she could stand if you held on to her. She was still having 20-50 seizures a day that we were seeing, so
in February she was started on the Ketogenic diet (a high fat, minimal carb diet). She spent a week in the hospital in
Charlotte during the initiation of the diet. She is completely tube fed by a tube in her stomach with a special formula
specifically for the Ketogenic diet. We were finally starting to see a difference when Madison became ill at the end of
March with her first case of pneumonia. We spent 4 days in the hospital and while we were there her infantile spasms
returned, which can happen with an illness.

We spent the next month and a half adjusting her meds hoping to eliminate the spasms and sadly watching the
developmental progress, though small, she had made disappear as her infantile spasms became worse and more
frequent. We treated her again with the steroids (one shot a day for 41 days) and thankfully her spasms disappeared,
but encountered dangerously high blood pressures and spent 5 days in the hospital trying to get them under control
so we could continue her steroid treatment. We were able to get her blood pressure down to an acceptable range
and continued her treatment. The day her steroid treatment was complete Madison became ill. A few days later she
was admitted to the hospital with her second case of pneumonia. She was very sick and ended up in the Pediatric
Intensive Care Unit, requiring oxygen to keep her oxygen levels in her blood at the right level. We watched her
struggle helplessly for the next several days praying hard and wondering if she were going to be able to continue
without being placed on a ventilator. Our prayers were answered and she rounded the corner and began the road to
recovery. We finally returned home after 11 days in the hospital. We returned home with oxygen, a pulse oximeter
to measure her oxygen, a vest that she wears twice a day for 20 minutes that jiggles her to hopefully prevent fluid
from settling in her lungs since she is not mobile, and suction if we need it. My husband and I just looked around and
giggled, our house had turned into a small hospital unit!

We were able to keep her healthy for about 6 weeks. On August 10 she became ill again with her third case of
pneumonia and again spent 5 days in the hospital with the majority of her stay in the pediatric intensive care unit.

Madison was born with hips that were out of joint. Madison will need to have surgery on her hips to correct her hip
problems. On March 24th, Madison underwent surgery at Duke for the correction of her right hip. She is
recovering at home in a body cast right now and is due to return to Duke in May for the surgery on the left hip.

Currently Madison is at home and going to get her body cast removed on April 30th. She has suffered from a
respiratory illness the past couple of weeks and required oxygen. Respiratory problems seem to be a recurring
problem with Madison and we seem to see this every four to eight weeks. We continue to battle her seizures on a
daily basis. She has anywhere between 10-30 seizures a day. She continues to be on four seizure medicines. She
also continues physical therapy, occupational therapy. We still do not have a diagnosis for why Madison is the way
she is and we may never know. We continue to love her more every day and are awed as we watch the
different ways she touches the people who come into her life. She is our very special angel! She may not be
able to talk, walk, sit, or play, but her smile will melt your heart and makes everything we do worthwhile!!!

As one can imagine, I have not been able to work near the amount of hours needed in order to help keep our family
afloat due to Madison’s ongoing issues. We have been trying to sell our house for the last 22 months so we can
reduce our house payment, but as you know the market is not in favor of the seller! Jay and I feel truly blessed that
this fund-raiser for Madison has been presented to us. It could not have come at a better time. We know that one
day we will be in a better financial position and we fully intend to give back all that has been given to us. We want to
thank you from the bottom of our hearts!

Sincerely,
Christy and Jay Goodnight