Avery's New Life - Brain Surgeries
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Avery's young life has been one of struggle and triumph.
Ever since she was born as a preemie, she has been fighting to simply survive. She overcame the challenges she faced early in life including bradycardia and apnea of prematurity where she would just stop breathing for no reason and eventually became a very normal toddler.
Days before her 2nd birthday we had a life changing event. Avery had a seizure. We didn't know the implications of this seemingly isolated occurence, but we were scared and cautious. After another seizure that this time lasted 20 minutes and included resuscitation in an ambulance, she was put on anticonvulsant medications and we were told that she "probably has epilepsy." It was another 2 years before we really knew what that meant.
By October of 2012, Avery had begun having seizures again, but none of us knew what they really were. She would complain that her leg was shaking or her hand was shaking. The only seizures I knew about up to this point were Grand Mal seizures, so I thought this was unrelated to her past issues. Then, one night she stopped talking. She was in a daze. Imagine a very sleepy child who doesn't want to fall asleep and fights it all the while her head is bobbing out of exhaustion. She was throwing up, but couldn't speak. We took her to the emergency room where she was immediately swarmed by doctors because she was non-responsive. This was the first I ever learned about Absence seizures, which is where a person suddenly and briefly loses consciousness, but still looks awake. The first Absence seizure we ever saw of Avery's lasted over 6 hours.
The last 3 years have been spent testing out a barrage of drugs and drug combinations to find something that works to stop Avery's seizures while not impairing her function too much to go to school and participate in life. Through several week long studies at Dell Children's Medical Center in the Epilepsy Monitoring Unit, the seizures were determined to be coming from one very focused part of Avery's brain. If we can remove that part, the seizures should stop. Finally, we had a care plan that did not involve simply increasing medications every time Avery had break-through seizures.
In September of 2013, we had what we hoped would be a life-altering brain resection. Once inside, the neurosurgeon removed a ping pong ball size mass of deformed tissue that hadn't appeared on any scans or MRIs. They were taking a conservative approach and did not remove the small focus they initially had planned on. Better to remove what clearly looked like non-functioning tissue than to cut live brain that could impair speech and motor skills if they didn't have to. Unfortunately, it was only 6 weeks post-op that Avery's seizures returned.
Now, 21 months later, Avery just came home from another surgery, this time a laser ablation to cauterize the offending area that they left during the September 2013 surgery. Her doctors are "very optimistic" that she will not have any seizures after this initial period of healing. During surgery, however, doctors ablated an area that affected the right side of her body. She has some weakness and droopiness on the right side of her face and she cannot feel her right foot at all. She can walk, but drags her foot as if it's asleep. She can't feel when it touches the ground.
We are all very optimistic that with physical and occupational therapy she will recover 100%. Unfortunately, even with insurance, after 2 major brain surgeries, weeks in epilepsy studies, medications, and various therapies, we are financially devastated. I received a bill just today for $588, the cost of Avery's occupational therapy PER MONTH and that's just paying the $130 coinsurance per appointment.
As a teacher, I have no idea how to pay for the treatment that Avery needs so that she can live a normal, happy, and healthy life. Please help if you can, and please share so more people can see our story.
Ever since she was born as a preemie, she has been fighting to simply survive. She overcame the challenges she faced early in life including bradycardia and apnea of prematurity where she would just stop breathing for no reason and eventually became a very normal toddler.
Days before her 2nd birthday we had a life changing event. Avery had a seizure. We didn't know the implications of this seemingly isolated occurence, but we were scared and cautious. After another seizure that this time lasted 20 minutes and included resuscitation in an ambulance, she was put on anticonvulsant medications and we were told that she "probably has epilepsy." It was another 2 years before we really knew what that meant.
By October of 2012, Avery had begun having seizures again, but none of us knew what they really were. She would complain that her leg was shaking or her hand was shaking. The only seizures I knew about up to this point were Grand Mal seizures, so I thought this was unrelated to her past issues. Then, one night she stopped talking. She was in a daze. Imagine a very sleepy child who doesn't want to fall asleep and fights it all the while her head is bobbing out of exhaustion. She was throwing up, but couldn't speak. We took her to the emergency room where she was immediately swarmed by doctors because she was non-responsive. This was the first I ever learned about Absence seizures, which is where a person suddenly and briefly loses consciousness, but still looks awake. The first Absence seizure we ever saw of Avery's lasted over 6 hours.
The last 3 years have been spent testing out a barrage of drugs and drug combinations to find something that works to stop Avery's seizures while not impairing her function too much to go to school and participate in life. Through several week long studies at Dell Children's Medical Center in the Epilepsy Monitoring Unit, the seizures were determined to be coming from one very focused part of Avery's brain. If we can remove that part, the seizures should stop. Finally, we had a care plan that did not involve simply increasing medications every time Avery had break-through seizures.
In September of 2013, we had what we hoped would be a life-altering brain resection. Once inside, the neurosurgeon removed a ping pong ball size mass of deformed tissue that hadn't appeared on any scans or MRIs. They were taking a conservative approach and did not remove the small focus they initially had planned on. Better to remove what clearly looked like non-functioning tissue than to cut live brain that could impair speech and motor skills if they didn't have to. Unfortunately, it was only 6 weeks post-op that Avery's seizures returned.
Now, 21 months later, Avery just came home from another surgery, this time a laser ablation to cauterize the offending area that they left during the September 2013 surgery. Her doctors are "very optimistic" that she will not have any seizures after this initial period of healing. During surgery, however, doctors ablated an area that affected the right side of her body. She has some weakness and droopiness on the right side of her face and she cannot feel her right foot at all. She can walk, but drags her foot as if it's asleep. She can't feel when it touches the ground.
We are all very optimistic that with physical and occupational therapy she will recover 100%. Unfortunately, even with insurance, after 2 major brain surgeries, weeks in epilepsy studies, medications, and various therapies, we are financially devastated. I received a bill just today for $588, the cost of Avery's occupational therapy PER MONTH and that's just paying the $130 coinsurance per appointment.
As a teacher, I have no idea how to pay for the treatment that Avery needs so that she can live a normal, happy, and healthy life. Please help if you can, and please share so more people can see our story.
Organizer
Melissa McDonald Peterson
Organizer
Cedar Park, TX
