Gabriel's Road to Success
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Thank you for visiting our page! This is Gabe's story:
Gabriel has never had it easy - and probably never will. Shortly after he was born in 2012 he began having seizures. They got so bad, he had to be given a large dose of phenobarbital to slow them down. He was born at a local hospital in Wisconsin and needed to be transferred to a Neonatal Intensive Care Unit in Madison which was over an hour away. There, he was instantly hooked up to an EEG so they could monitor his brain activity. We could not hold him because of all of the different machines he was hooked up to. Once the seizure activity subsided about 4 days later, they removed the EEG probes from his head and backed off of the phenobarbital to start a new seizure medication. We could finally hold our newborn son. He was still sleepy from the medication, but just being able to finally hold him in our arms was the best feeling in the world.
During his 2.5 week stay, they ran many tests and took countless MRIs and xrays. It was determined that the PDA valve in his heart had remained open and would need to be monitored to make sure it closes, otherwise he would need surgery. He was diagnosed with a form of spina bifida and would definitely need surgery to help. It was also found that he had a genetic disorder. He had duplications of chromosomes 8 and 22. The geneticist tried to tell us what this could mean for Gabe, but genetics are still very new - and he had some rare duplications. The doctor wasn't even sure what the combination of the extra copies of chromosomes could mean and how they would interact with each other. Gabe's ease of every day life was up in the air. Only time would tell how he would develop and grow.
During the first few months of his life, we were in and out of doctor appointments. He saw a neurologist, neurosurgeon, geneticist, and cardiologist. The PDA valve in his heart had closed, so no surgery would be needed. He had spinal cord surgery just after he turned 3 months old. He had to have a follow up 4 hour EEG to see if there was still seizure activity. Happily, there wasn't and the medicine was helping!! He would be on this medicine daily for the unforseen future.
Poor little Gabe had severely low muscle tone and little to no reaction to the world around him. He could not hold up his own head very well, and needed constant support. He wasn't very curious like little babies usually are. He just kind of sat with you. He was always a very serious baby - just taking in the world around him. We left Wisconsin and moved back to Illinois where he could be in a better Early Intervention Program and receive multiple therapies. This would be key to helping Gabe grow: physically and developmentally.
He couldn't do tummy time because he was so weak that he could not hold himself up. He could barely sit up on his own without help - a basic skill that took about a year to accomplish. He couldn't talk and barely made sounds. He couldn't focus on anything and had a very delayed reaction. He almost seemed to be taking the world in, but gave no clues to us as to how to communicate that. All we could do was show him immense amounts of love - plenty of hugs and kisses and cuddles for our baby boy.
We tried to start feeding him different foods after he turned about 6 months, but he would gag on anything textured and more often than not, throw it up. There was little to no weight gain over the course of about 6 months and he quickly fell off of the growth chart. He threw up almost every day for about 7 months before a GI doctor determined that he has EOE (eosinophilic esophagitis). He was having an allergic reaction in his esophagus to the food he was eating. This turned out to be a very complicated thing for him. He didn't show a normal allergic reaction like hives or a rash. Instead, he would just puke up his food. We thought his low tone was just affecting something in his stomach. Instead, he was hurting every time he ate. We felt awful.
November 2014 we had to stop all foods and he was placed on a prescription formula. That was all he could "eat". After 2 months and no weight gain, they decided that he needed to have a feeding tube placed in order to get his weight up so he could have a better quality of life. We would focus on large overnight feedings to help supplement him. Another surgery needed for our little boy.
He has had the feeding tube/Mickey Button since February and has been on 2 daily medications to help. He has gained 5 pounds since then and is finally in the low percentile of the growth chart! He has been in EI for 2 years now which has changed his life. He can finally sit on his own, play with toys, and is attentive to everything going on around him! He still does not have enough strength to crawl, but has figured out how to scoot on his butt across the wood floor. He cannot walk, but with assistance, he can stand up. He does not talk but uses sign language when prompted. He can say "da da" "mom" and sometimes a "buh-bye", but mostly it is babbles and sounds you would hear from a baby.
He has made some small milestones since the feeding tube has been placed, and we hope he continues to grow and get strong. He sees nurses daily and gets therapy on an almost daily basis. He just recently has been allowed to eat a small number of different foods to try and build his skills with oral sensitivity. That in itself has been a struggle as he doesn't know how to eat and is basically getting pureed food that a 6 month old would be getting. He still gets tube feedings overnight, which is where most of his weight gain is coming from. It has helped, but only after we got it down to a science. He still has very low tone, so he can only be carried around unless we are home where it is comfortable for him to scoot around. He has a walker which he will eventually be able to walk around with. Until then, he will have a wheelchair to get around, once approved by his insurance. EI has been a wonderful and immensely helpful program for Gabe. He has done so well with the help of his therapists.
It has been an immense financial struggle over the last 3 years. I have had to become a stay at home mom in order to give Gabe the care he needs. There is no shortage of medical bills on top of other bills that have to be paid. My husband makes too much money for us to utilize any public aid, but not enough cover every day life along with all of Gabe's medical needs. Insurance only covers so much, and we are left to pay the rest. It hasn't been easy. His prescription fomula wasn't covered and we would have to pay for it ourselves at about $50 per can. Some weeks, we are barely treading water.
We do not know what the outcome will be for Gabriel. We do not know what he will be able or not able to do. We hope every day that this will be the day he starts talking and won't stop - the day he starts walking and we have to chase him around - the day he can be a normal 3 year old. We never know what he is going to be diagnosed with next or what condition he may have. We keep hoping things will turn around and hope for only good news.
We never stop fighting - and Gabe never stops smiling!! :)
Thank you for taking your time to read Gabe's story!
Gabriel has never had it easy - and probably never will. Shortly after he was born in 2012 he began having seizures. They got so bad, he had to be given a large dose of phenobarbital to slow them down. He was born at a local hospital in Wisconsin and needed to be transferred to a Neonatal Intensive Care Unit in Madison which was over an hour away. There, he was instantly hooked up to an EEG so they could monitor his brain activity. We could not hold him because of all of the different machines he was hooked up to. Once the seizure activity subsided about 4 days later, they removed the EEG probes from his head and backed off of the phenobarbital to start a new seizure medication. We could finally hold our newborn son. He was still sleepy from the medication, but just being able to finally hold him in our arms was the best feeling in the world.
During his 2.5 week stay, they ran many tests and took countless MRIs and xrays. It was determined that the PDA valve in his heart had remained open and would need to be monitored to make sure it closes, otherwise he would need surgery. He was diagnosed with a form of spina bifida and would definitely need surgery to help. It was also found that he had a genetic disorder. He had duplications of chromosomes 8 and 22. The geneticist tried to tell us what this could mean for Gabe, but genetics are still very new - and he had some rare duplications. The doctor wasn't even sure what the combination of the extra copies of chromosomes could mean and how they would interact with each other. Gabe's ease of every day life was up in the air. Only time would tell how he would develop and grow.
During the first few months of his life, we were in and out of doctor appointments. He saw a neurologist, neurosurgeon, geneticist, and cardiologist. The PDA valve in his heart had closed, so no surgery would be needed. He had spinal cord surgery just after he turned 3 months old. He had to have a follow up 4 hour EEG to see if there was still seizure activity. Happily, there wasn't and the medicine was helping!! He would be on this medicine daily for the unforseen future.
Poor little Gabe had severely low muscle tone and little to no reaction to the world around him. He could not hold up his own head very well, and needed constant support. He wasn't very curious like little babies usually are. He just kind of sat with you. He was always a very serious baby - just taking in the world around him. We left Wisconsin and moved back to Illinois where he could be in a better Early Intervention Program and receive multiple therapies. This would be key to helping Gabe grow: physically and developmentally.
He couldn't do tummy time because he was so weak that he could not hold himself up. He could barely sit up on his own without help - a basic skill that took about a year to accomplish. He couldn't talk and barely made sounds. He couldn't focus on anything and had a very delayed reaction. He almost seemed to be taking the world in, but gave no clues to us as to how to communicate that. All we could do was show him immense amounts of love - plenty of hugs and kisses and cuddles for our baby boy.
We tried to start feeding him different foods after he turned about 6 months, but he would gag on anything textured and more often than not, throw it up. There was little to no weight gain over the course of about 6 months and he quickly fell off of the growth chart. He threw up almost every day for about 7 months before a GI doctor determined that he has EOE (eosinophilic esophagitis). He was having an allergic reaction in his esophagus to the food he was eating. This turned out to be a very complicated thing for him. He didn't show a normal allergic reaction like hives or a rash. Instead, he would just puke up his food. We thought his low tone was just affecting something in his stomach. Instead, he was hurting every time he ate. We felt awful.
November 2014 we had to stop all foods and he was placed on a prescription formula. That was all he could "eat". After 2 months and no weight gain, they decided that he needed to have a feeding tube placed in order to get his weight up so he could have a better quality of life. We would focus on large overnight feedings to help supplement him. Another surgery needed for our little boy.
He has had the feeding tube/Mickey Button since February and has been on 2 daily medications to help. He has gained 5 pounds since then and is finally in the low percentile of the growth chart! He has been in EI for 2 years now which has changed his life. He can finally sit on his own, play with toys, and is attentive to everything going on around him! He still does not have enough strength to crawl, but has figured out how to scoot on his butt across the wood floor. He cannot walk, but with assistance, he can stand up. He does not talk but uses sign language when prompted. He can say "da da" "mom" and sometimes a "buh-bye", but mostly it is babbles and sounds you would hear from a baby.
He has made some small milestones since the feeding tube has been placed, and we hope he continues to grow and get strong. He sees nurses daily and gets therapy on an almost daily basis. He just recently has been allowed to eat a small number of different foods to try and build his skills with oral sensitivity. That in itself has been a struggle as he doesn't know how to eat and is basically getting pureed food that a 6 month old would be getting. He still gets tube feedings overnight, which is where most of his weight gain is coming from. It has helped, but only after we got it down to a science. He still has very low tone, so he can only be carried around unless we are home where it is comfortable for him to scoot around. He has a walker which he will eventually be able to walk around with. Until then, he will have a wheelchair to get around, once approved by his insurance. EI has been a wonderful and immensely helpful program for Gabe. He has done so well with the help of his therapists.
It has been an immense financial struggle over the last 3 years. I have had to become a stay at home mom in order to give Gabe the care he needs. There is no shortage of medical bills on top of other bills that have to be paid. My husband makes too much money for us to utilize any public aid, but not enough cover every day life along with all of Gabe's medical needs. Insurance only covers so much, and we are left to pay the rest. It hasn't been easy. His prescription fomula wasn't covered and we would have to pay for it ourselves at about $50 per can. Some weeks, we are barely treading water.
We do not know what the outcome will be for Gabriel. We do not know what he will be able or not able to do. We hope every day that this will be the day he starts talking and won't stop - the day he starts walking and we have to chase him around - the day he can be a normal 3 year old. We never know what he is going to be diagnosed with next or what condition he may have. We keep hoping things will turn around and hope for only good news.
We never stop fighting - and Gabe never stops smiling!! :)
Thank you for taking your time to read Gabe's story!
Organizer
Nicole Piper
Organizer
Elgin, IL