- M
- D
Hello, my name is Bonnie and I'm creating this page because one of my dearest and best of friends needs a little help. Amanda is a great mother who always puts her daughter Paige first over anything. She is such a strong and brave woman, and has passed that courage onto her 9 year old daughter. Paige will need brain surgery on February 11, 2019. Before I dive right into the details of that, let me give you a little background of Amanda and Paige's journey.
Two days before her due date, Amanda was induced and gave birth to what we all expected to be a healthy baby girl. Paige was barely pushing 2 hours old when the nurses realized that something was not right. She was rushed to the NICU where she received xrays. It was discovered that her esophagus was not connected to her stomach and that her anus was partially closed. The doctor then was able to diagnose her with VATER Syndrome. Until recently, Paige suffered from just esophageal and digestive issues.
Paige had her first major surgery to connect her esophagus to her stomach at just one day old. Just hours after her surgery her right lung partially collapsed. Thankfully the doctors were able to fix that issue as quickly as they possibly could. Sweet girl had to stay in the NICU for 30 days due to the inability to gain weight and keep that weight on. When she was 6 months old, she had her second surgery on her esophagus. This surgery was an esophageal dilation because the scar tissue from the first surgery was causing trouble with her ability to swallow by causing the esophagus to close up slowly. Her amazing surgeon installed a balloon like structure to keep her esophagus open, but she periodically has to go in to expand it when it starts closing. She is currently up to her 8th dilation. This is a lifetime condition that will never be fully fixed.
This past summer, Paige started having more headaches and more unexplained falls. Also, her already "off" way of walking was getting worse. Her gastroenterologist sent her to an orthopedist in October and there she was discovered to have scoliosis. . She has to wear a back brace for 20 hours a day. During the beginning stages of this visit, the orthopedist sent her for MRI's of her spine. After the results came back, he referred her to a neurosurgeon. The results had shown that she had numerous pockets of fluid built up in her spinal cord.
The first appointment with the neurosurgeon was this past January 4, and things are more serious than Amanda anticipated. The doctor informed her that that Paige has what is called Chiari Malformation Type 1. The malformation occurs when the lower part of the brain called the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord), without involving the brain-stem. Normally, only the spinal cord passes through the foramen magnum. This is why she has so much fluid built up on her spinal cord and what can be causing the headaches and falling. The neurosurgeon also believes this is the root cause for my scoliosis. The only way to repair this is to have surgery. The surgery itself will keep Paige in the hospital for 3-5 days. She will then finish recovery at home for up to 8 weeks. She will have to do Homebound for school and work her way back into the classroom very slowly.
Amanda is currently a substitute teacher. She loves this job because she has always dreamed of being a teacher, but this allows her the flexibility to bring Paige to doctor appointments and physical therapy. Amanda will be missing 3-4 full weeks of work, along with having to bump down to only working 1-3 days a week after until Paige is back at school full time.
All I am asking is that if there is anything you can do to help, please do. Every little bit counts and is more appreciated than can ever be expressed. Thank you and God bless.
*Please keep all negative and or childish comments to yourself. Amanda is stressed out enough as is, let's be adults and not add on to the already stressful situation.*
Two days before her due date, Amanda was induced and gave birth to what we all expected to be a healthy baby girl. Paige was barely pushing 2 hours old when the nurses realized that something was not right. She was rushed to the NICU where she received xrays. It was discovered that her esophagus was not connected to her stomach and that her anus was partially closed. The doctor then was able to diagnose her with VATER Syndrome. Until recently, Paige suffered from just esophageal and digestive issues.
Paige had her first major surgery to connect her esophagus to her stomach at just one day old. Just hours after her surgery her right lung partially collapsed. Thankfully the doctors were able to fix that issue as quickly as they possibly could. Sweet girl had to stay in the NICU for 30 days due to the inability to gain weight and keep that weight on. When she was 6 months old, she had her second surgery on her esophagus. This surgery was an esophageal dilation because the scar tissue from the first surgery was causing trouble with her ability to swallow by causing the esophagus to close up slowly. Her amazing surgeon installed a balloon like structure to keep her esophagus open, but she periodically has to go in to expand it when it starts closing. She is currently up to her 8th dilation. This is a lifetime condition that will never be fully fixed.
This past summer, Paige started having more headaches and more unexplained falls. Also, her already "off" way of walking was getting worse. Her gastroenterologist sent her to an orthopedist in October and there she was discovered to have scoliosis. . She has to wear a back brace for 20 hours a day. During the beginning stages of this visit, the orthopedist sent her for MRI's of her spine. After the results came back, he referred her to a neurosurgeon. The results had shown that she had numerous pockets of fluid built up in her spinal cord.
The first appointment with the neurosurgeon was this past January 4, and things are more serious than Amanda anticipated. The doctor informed her that that Paige has what is called Chiari Malformation Type 1. The malformation occurs when the lower part of the brain called the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord), without involving the brain-stem. Normally, only the spinal cord passes through the foramen magnum. This is why she has so much fluid built up on her spinal cord and what can be causing the headaches and falling. The neurosurgeon also believes this is the root cause for my scoliosis. The only way to repair this is to have surgery. The surgery itself will keep Paige in the hospital for 3-5 days. She will then finish recovery at home for up to 8 weeks. She will have to do Homebound for school and work her way back into the classroom very slowly.
Amanda is currently a substitute teacher. She loves this job because she has always dreamed of being a teacher, but this allows her the flexibility to bring Paige to doctor appointments and physical therapy. Amanda will be missing 3-4 full weeks of work, along with having to bump down to only working 1-3 days a week after until Paige is back at school full time.
All I am asking is that if there is anything you can do to help, please do. Every little bit counts and is more appreciated than can ever be expressed. Thank you and God bless.
*Please keep all negative and or childish comments to yourself. Amanda is stressed out enough as is, let's be adults and not add on to the already stressful situation.*
Organizer and beneficiary
Amanda Dixon
Beneficiary