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Feb 13, 2015
Welcome to Amanda's page! Amanda is a very special girl who is the light of her mom and dad's world! We have created this site to help our friends and family stay informed of how she is doing. Feel free to start by reading her Journal entries and look at her pictures. You can leave her a message in her Guestook.
Amanda was born a happy, helathy baby girl in 1997. As she grew, we learned she had some health problems that would be a challenge for her. She has had several surgeries and has been under the care of many specialists since she was a year old.
At a year old, we learned that Amanda had a hole in her heart, called a PFO. Over the years, she has developed tachycardia and her heart will beat too fast and make her sick. She has also experienced premature atrial and ventrical contractions that make her heart beat irregular. She takes medicine that helps regulate her heartrate. She has been diagnosed with dysautonomia, which causes her blood pressure to drop when she goes from a horizontal or sitting position to upright or standing. She takes medication to help keep her blood volume up to prevent her from passing out when this happens.
When she was five, she had surgery to correct reflux in her kidneys. She continued to have many urinary tract infections and bladder spasms for several years. She was referred to a neurosurgeon, who diagnosed that her spinal cord was tethered. At age ten, she had surgery to de-tether her spinal cord, but she has nerve damage that remains and her bladder and bowel do not function as they should. Her diagnosis is neurogenic bladder and bowel.
At age 13, she had surgery to place a g-tube for hydration. Her kidneys form calcium-oxalate crystals and she is at a high risk for developing kidney stones. The crystals also contribute to the infections. She needs a large volume of fluids each day to help prevent the crystals, so she is now receiving them via the g-tube. She has had three episodes with kidney stones that have led to multiple surgeries and stents in her ureters into her kidneys.
At age 14, Amanda was diagnosed with a Chiari Malformation. Her brain herniated through the opening at the base of her skull into her spine and blocked the flow of CSF that surrounded her brain and spine. Once again, the neurosurgeon did surgery to correct this. She performed a procedure called decompression where she removed a small piece of her skull to make the opening larger, she shaved a part off of the top vertebrae of her spine, opened the dura (covering surrounding the brain), cauterized the base of her brain (cerebellar tonsils) to shrink them and move them up inside the skull where they belong), and then placed a patch on the dura to enlarge the area. Amanda tolerated the surgery well but still has some issues that remain.
At age 16, Amanda began testing with a Geneticist and was diagnosed with Mitochondrial Disease. To date, she has not completed all of the testing necessary to identify which complex she has but has began receiving treatment for the disorder. Mito is known to be a progressive disease and affects all of the major organ systems. It affects the mitochondria, which are found in all human cells except red blood cells. The mitochondria are responsible for producing ATP, which is basically the battery charging system of the body. What being diagnosed with Mito means for her at this point is that she has low energy levels witch are quickly depleted. Minor illnesses or exertions take a huge toll on her body and she requires a great deal of rest.
Amanda also battles inflammatory arthritis, asthma, ADHD, and migraine headaches. She receives physical and occupational therapy to help manage these conditions.
Amanda loves to spend time with her friends and family. She enjoys golf and swimming. She loves to help her Gramps restore and show antique tractors. She loves baking cookies with her Mamaw. She and her Granny enjoy working jigsaw puzzles. Her favorite thing to do is spend time with her chihuahua, Sophie and her beagle, Shiloh. Her new hobby is taking care of her neon fish in her aquarium. She enjoys helping out on the farm and the garden. Overall, she is a fun-loving, all-American girl!