Carsyn's Trip to NAPA
Donation protected
You can visit the link below to follow Carsyn's experience at NAPA!
www.keepingupwithcarsyn.com
This page is to assist in funding Carsyn’s trip to NAPA (Neurological and Physical Abilitation) Center in Los Angeles, CA for a 3-week intensive therapy program. The center is world renowned and difficult to get into. So difficult in fact, their website crashed due to the amount of people trying to register their children for the 2018 dates! Luckily, Andrew & Alicia were able to get Carsyn on the list for a late summer session in August. At NAPA, her physical, occupational, and speech therapists will assist her through 4 hours of therapy 5 days per week for the 3 week period. The methods of therapy that they utilize with the intensive model at NAPA are not available anywhere around central Illinois. Alicia & Andrew have spoke with other parents that have taken their children to NAPA and have been amazed with the outcomes they’ve seen. Every child is different of course, but they say this program can advance a child in reaching their goals in 3 weeks what would normally take 6 months of traditional therapy. Currently, Carsyn is unable to sit, roll, crawl, or walk independently. She is very close to being able to sit and is able to take steps in her gait trainer. Hopefully, after this intensive session she will advance and be closer to reaching her goals. Andrew & Alicia are so excited to give Carsyn this opportunity, but could use a little help to make it happen financially. It will cost around $14,000 for everything (none of which will be covered by insurance as it is “out of network”). Anything you can contribute would be greatly appreciated not only by Alicia & Andrew, but also by miss Carsyn K of course! She has been showing us how strong, brave, and determined she is since day 1. We know she will work her little booty off in LA and have great outcomes!
For those of you who don’t know Carsyn’s story, here is the very shortened version (as short as we could make it) :
She was a 100% healthy, typically developing baby girl up until the day she was born. She had a difficult birth and was not tolerating the Pitocin. Her heart rate had multiple issues throughout the 24-hour labor process, but unfortunately she was never taken for an emergency C-section. When she was born, she was blue, unable to breathe completely on her own and had fresh meconium in her amniotic fluid from the stress of birth. After some supplemental oxygen, labs, and a chest x-ray, the team determined she was fine and was able to go back to the room with Andrew & Alicia that night. However, a few hours later, she started having spells where she would quit breathing (apnea). They took her back to the nursery for oxygen, but she kept having the spells and ultimately had to be intubated and transferred to St. John’s NICU at 6 AM the next morning. Once she got there, the doctors determined these apnea spells were actually seizures.
After days of monitoring, testing, and several attempts at trying to remove the breathing tube, the doctors confirmed their suspicions with an MRI. Carsyn had HIE (hypoxic ischemic encephalopathy). Sometimes these injuries occur in babies in various parts of the brain and can be very small. Carsyn's unfortunately, was a global (all over) injury. It is difficult to determine the exact cause of her injury, but it was very likely due to frequent cord compression during the labor process. Her brain had gone without oxygen too many times and had become injured. Usually when this happens to babies at birth, they receive hypothermic (“cooling”) therapy where their whole body is cooled to a lower temperature to preserve organs and help stop/prevent brain damage. Unfortunately, this must be started within 6 hours of birth or the “injury” and Carsyn’s signs and symptoms of HIE were not realized soon enough to receive the cooling treatment.
After learning all of this and spending 1 week in the NICU, Andrew & Alicia were obviously devastated, but extremely thankful to still have Carsyn here with them after a rollercoaster of emotions and uncertainty for the first week of her life. Not exactly how you imagine the first week with your first baby going. Carsyn left the NICU doing very well. Months later, the results of her injury became more apparent. She started having seizures again and was diagnosed with epilepsy, along with cortical visual impairment, and cerebral palsy (all due to the HIE at birth). Despite her diagnosis, she is doing great and continues to progress. Her team of physicians, nurses, and therapists are very impressed with how well she is doing. Other babies who have injuries similar to Carsyn’s are unable to move at all, unable to breathe on their own and have tracheostomies (amongst many other things). We are all so thankful she is exceeding all expectations. Babies’ brains are amazing!
Andrew and Alicia work extremely hard to provide Carsyn with every opportunity they can find in order to put her in the best position to strengthen and further her development. That has been their goal from day 1. She has been in physical therapy, occupational therapy, speech therapy, aqua therapy, and vision therapy since she was just a few months old. It definitely keeps them busy, but they are so glad to have these amazing therapists who are critical to her continual progress and they look forward to meeting more great therapists at the NAPA Center in California!
www.keepingupwithcarsyn.com
This page is to assist in funding Carsyn’s trip to NAPA (Neurological and Physical Abilitation) Center in Los Angeles, CA for a 3-week intensive therapy program. The center is world renowned and difficult to get into. So difficult in fact, their website crashed due to the amount of people trying to register their children for the 2018 dates! Luckily, Andrew & Alicia were able to get Carsyn on the list for a late summer session in August. At NAPA, her physical, occupational, and speech therapists will assist her through 4 hours of therapy 5 days per week for the 3 week period. The methods of therapy that they utilize with the intensive model at NAPA are not available anywhere around central Illinois. Alicia & Andrew have spoke with other parents that have taken their children to NAPA and have been amazed with the outcomes they’ve seen. Every child is different of course, but they say this program can advance a child in reaching their goals in 3 weeks what would normally take 6 months of traditional therapy. Currently, Carsyn is unable to sit, roll, crawl, or walk independently. She is very close to being able to sit and is able to take steps in her gait trainer. Hopefully, after this intensive session she will advance and be closer to reaching her goals. Andrew & Alicia are so excited to give Carsyn this opportunity, but could use a little help to make it happen financially. It will cost around $14,000 for everything (none of which will be covered by insurance as it is “out of network”). Anything you can contribute would be greatly appreciated not only by Alicia & Andrew, but also by miss Carsyn K of course! She has been showing us how strong, brave, and determined she is since day 1. We know she will work her little booty off in LA and have great outcomes!
For those of you who don’t know Carsyn’s story, here is the very shortened version (as short as we could make it) :
She was a 100% healthy, typically developing baby girl up until the day she was born. She had a difficult birth and was not tolerating the Pitocin. Her heart rate had multiple issues throughout the 24-hour labor process, but unfortunately she was never taken for an emergency C-section. When she was born, she was blue, unable to breathe completely on her own and had fresh meconium in her amniotic fluid from the stress of birth. After some supplemental oxygen, labs, and a chest x-ray, the team determined she was fine and was able to go back to the room with Andrew & Alicia that night. However, a few hours later, she started having spells where she would quit breathing (apnea). They took her back to the nursery for oxygen, but she kept having the spells and ultimately had to be intubated and transferred to St. John’s NICU at 6 AM the next morning. Once she got there, the doctors determined these apnea spells were actually seizures.
After days of monitoring, testing, and several attempts at trying to remove the breathing tube, the doctors confirmed their suspicions with an MRI. Carsyn had HIE (hypoxic ischemic encephalopathy). Sometimes these injuries occur in babies in various parts of the brain and can be very small. Carsyn's unfortunately, was a global (all over) injury. It is difficult to determine the exact cause of her injury, but it was very likely due to frequent cord compression during the labor process. Her brain had gone without oxygen too many times and had become injured. Usually when this happens to babies at birth, they receive hypothermic (“cooling”) therapy where their whole body is cooled to a lower temperature to preserve organs and help stop/prevent brain damage. Unfortunately, this must be started within 6 hours of birth or the “injury” and Carsyn’s signs and symptoms of HIE were not realized soon enough to receive the cooling treatment.
After learning all of this and spending 1 week in the NICU, Andrew & Alicia were obviously devastated, but extremely thankful to still have Carsyn here with them after a rollercoaster of emotions and uncertainty for the first week of her life. Not exactly how you imagine the first week with your first baby going. Carsyn left the NICU doing very well. Months later, the results of her injury became more apparent. She started having seizures again and was diagnosed with epilepsy, along with cortical visual impairment, and cerebral palsy (all due to the HIE at birth). Despite her diagnosis, she is doing great and continues to progress. Her team of physicians, nurses, and therapists are very impressed with how well she is doing. Other babies who have injuries similar to Carsyn’s are unable to move at all, unable to breathe on their own and have tracheostomies (amongst many other things). We are all so thankful she is exceeding all expectations. Babies’ brains are amazing!
Andrew and Alicia work extremely hard to provide Carsyn with every opportunity they can find in order to put her in the best position to strengthen and further her development. That has been their goal from day 1. She has been in physical therapy, occupational therapy, speech therapy, aqua therapy, and vision therapy since she was just a few months old. It definitely keeps them busy, but they are so glad to have these amazing therapists who are critical to her continual progress and they look forward to meeting more great therapists at the NAPA Center in California!
Organiser
Andrew Messmore
Organiser
Springfield, IL
