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Lexi's Story
written by mom Heather |
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I had a very uneventful pregnancy with Alexis. She was born at 40 weeks
after only 2 hours of labor, weighing 7 pounds 6 ounces.
Lexi was a healthy baby. She seemed to be developing just fine but we did
noticed though, that she did not walk until she was 20 months old. Our
doctor at the time, just told us it was because she had 3 big sisters and
she was probably a little lazy. Other than that, everything seemed fine.
At the age of 6, we noticed that she was having trouble walking and it
seemed like her right leg was turning in. At first, the doctor thought that
it was because of the way she was sitting, so she had us make her sit Indian
style to try to make the leg turn back out. Three months later, we went back
and her leg was just getting worse. We were sent to a local orthopedist who
in turn sent us to a pediatric orthopedic doctor. They also sent us to
another specialist who ran some tests and told us they were pretty sure that
Lexi had Mild Spastic Diplegia Cerebral Palsy. I felt this was not the right
diagnosis but was assured that it was.
In 2006, Lexi had heel cord lengthening and a rotational osteotomy in her
right leg. At this time, she was now using a walker to get around. Instead
of getting stronger, Lexi only got weaker. Through some other testing that
was done, it was discovered that Lexi also has a Thyroid disease called
Hashimoto Disease, which is where her body attacked the thyroid destroying
some of its tissue.
Because Alexis’ symptoms were progressing, they ran some more tests and told
us she does not have Cerebral Palsy. They have found calcification in her
basil ganglia, she has lost most of the strength in her legs, she has
seizures, she has uncontrolled muscle spasms, she has acid reflux, she has a
bladder disorder, she deals with Failure to Thrive, (at age 11, she weighed
in at 43 pounds, while being 46 inches tall, and has been the same since she
was 10), and just recently she has lost some of the strength in her hands.
Lexi has been tested for Mitochondria, Muscular Dystrophy, and numerous
other disorders... and an answer has not been found. She has had MRIs, CAT
scans, x-rays, blood work and bone scans. They tell us that she has a rare
disease that is progressive and non-curable. Her neurologist has sent her
paperwork and test results to a colleague in New York hoping that he may
have some idea of what to test her for next. We were referred to the
Cleveland Clinic but they told us they would not set up an appointment
because our insurance will not pay them, so now we are hoping to be referred
to either St Jude’s or the Shriners Hospital.
Lexi goes to physical therapy twice a week and just started occupational
therapy twice a week. She is up to 7 different medications to help with
everything that is going on. Just recently, she spent 3 days in the hospital
because her heart rate was almost double what it should be, they got it to
slow down, but they have no idea what caused it to become elevated.
Lexi has a great attitude and only sometimes does she really let things get
her down. She has four sisters and one brother. They are all healthy. They
do very good taking care of her, it’s so precious to see how much they care
for her. I am a stay-at-home mom, I have home schooled all of them and last
year my oldest graduated. My husband is a hard worker who does his best to
take care of all of us. He is awesome!
(Story and Interests were last updated November, 2008)
Disabilities: (
If child has any physical limitations)
Lexi
is mostly on a wheelchair though she walks sometimes at physical therapy
using a walker. Her hands are not too strong.
Child's Interests:
Lexi loves dolls, watching TV, playing video games and her doll house.
Siblings:
sister Jessica, old
sister Rebekah, old
sister Jennifer, old
sister Mikayla, old
brother Caleb, old
Sibling's Interests:
Jessica is a cosmetology student. She likes movies and music.
Rebekah likes basketball, music, reading and movies.
Jennifer likes video games, music and learning the guitar.
Mikayla likes make-up, High School Musical, Hannah Montana and Barbies.
Caleb likes dinosaurs, cars, trains and movies.
Click
HERE
for recent MACS updates on Lexi
(these Updates are a Summary of the past 3 months)
