In the beginning....
My little boy came into this world via an emergency c-section and then suffered meconium aspiration, respiratory distress (turning blue three times) and jaundice resulting in a very unexpected NICU stay. The first year of his life was filled with a lot of struggles but we are finally getting some answers as to what is going on with our little boy. What was originally diagnosed as colic and acid reflux has turned into something much more complex than we could have ever imagined.
In June of 2013, we learned that Abram has a Cystic Lesion in his brain on the Pineal gland, which is the deepest part of the brain and requires the most invasive brain surgery to remove it. Currently we are at the "wait and watch it grow" stage and he will be getting his SIXTH MRI in March of 2016 to check the mass for growth. We were originally told that this was "incidental" and would not need further scanning but the more they scan it the more they need to rescan. We were most recently told that catching changes in the mass early vs. waiting a year or more to do another scan is something we will just have to do. So every six months we have to fully sedate and intubate our son to get an MRI as we watch that mass and hope that it is stable.
In June of 2013, we learned that Abram has a Cystic Lesion in his brain on the Pineal gland, which is the deepest part of the brain and requires the most invasive brain surgery to remove it. Currently we are at the "wait and watch it grow" stage and he will be getting his SIXTH MRI in March of 2016 to check the mass for growth. We were originally told that this was "incidental" and would not need further scanning but the more they scan it the more they need to rescan. We were most recently told that catching changes in the mass early vs. waiting a year or more to do another scan is something we will just have to do. So every six months we have to fully sedate and intubate our son to get an MRI as we watch that mass and hope that it is stable.
Abram also suffers from Hypotonia (decreased muscle tone due to an underlying disease/disorder), Global Developmental Delays and was diagnosed with a Rare Chromosome Disorder on New Years Eve 2012. His Chromosome Disorder is so rare that there are only 35 other registered cases in the last 30 years, so our team of specialists are not exactly sure as to how to help us. Our Geneticists are in the process of trying to find a syndrome that could match his diagnoses and so far we haven't gotten any answers. For now, the only name his rare disorder has is 7q31.31, which for simplicity's sake means that he has a deletion of Chromosome 7 on the 31st band. Due to the fact that his father is a carrier, the geneticists feel that this finding is not what is causing his issues and that there is a larger syndromic issue that has yet to be discovered. (This underlying issue is now known and Abram's official condition is called "UBE2A Deficiency Syndrome")
In October of 2014, we received an Epilepsy Diagnosis after a scary event that involved a 911 call and ambulance ride to our Children's Hospital. Here we are- nearly a year later and it took two more MRI's and three hospitals to find that in addition to the mass in the center of his brain he also has a condition called Neuronal Migration Disorder. This was found by the Mayo Clinic in in September of 2015 and although it was present on previous MRIs, it often takes a specialized neuro-radiologist to catch such subtle changes in brain tissue. Grey matter heterotopia means that as he was developing, the grey matter in his brain did not migrate out to where it should as he was developing. So, essentially there are bits of brain where there shouldn't be that type and it makes his brain misfire. Our Neurologist at Mayo felt that this condition was the fundamental cause of our son's seizures, developmental delays and his intellectual disability. In addition, Abram never really gets any rest due to independent discharges in his brain where the neurons get interrupted by the misplaced brain matter and it has caused him major issues in the ability to retain language.
Abram has Sensory Processing Disorder as well and has been in various therapies since he was just 10 months old. He finally walked at 2.5 (the best Christmas gift ever in 2014) and he is currently in Occupational Therapy, Speech Therapy and Feeding Therapy at a private facility called ChildServe (a non-profit organization that helps children with special health care needs). He is currently still non-verbal at 4 but he can sign most of his wants and needs and is working hard at re-learning many things after his last bout of Neurological issues in March of 2015.
In May of 2015, we were told by our Neurologist about a medicine called CBD, a form of cannabis oil. After Klonopin caused more frequent and new seizure types and adding in another anti-epileptic drug called Keppra worsened his condition, we decided on trying cannabis oil in June of 2015. He has been seizure-free ever since.
Many people mistakenly think that because CBD is legal in our state that it is "easy" to get a card. This is absolutely untrue: it took us seven months of advocating with our lawmakers and multiple diagnoses from three different Hospitals to receive the required medical diagnosis of "intractable epilepsy" and the ability to gain access to Iowa's Cannabidiol Registration Card. When we started, our local Children's Hospital would not support this type of medicine without FDA Approval and were in essence blocking an entire Pediatric Epilepsy Community from having legal access without a Neurologist's recommendation. Up until last year, they even had a paid lobbyist fighting our efforts at the state house. However, I have since heard that there are a few patients receiving approval from this Hospital so I'm hoping this is a positive change and a step forward as CBD-only laws and hospital stances against natural medicines are forcing parents to be criminals and it isn't right!
As I write this, our child is nearly 18 months free of physical seizures thanks to cannabis. We are working with our legislators at home and in DC to legalize medical cannabis so everyone can have access. CBD-only laws are failing our sick and suffering across the country. Everyone deserves access to whole-plant cannabis.
Please, join us on our journey and read our Blog! With a lot of hope, love, patience and hard work, we are going to make sure that our little boy has the best quality of life possible. We created this website as a way for our friends and family to keep up our son. We are thankful for all the kind words, gestures and time that people are taking to help us keep our heads above water. We love you.
In October of 2014, we received an Epilepsy Diagnosis after a scary event that involved a 911 call and ambulance ride to our Children's Hospital. Here we are- nearly a year later and it took two more MRI's and three hospitals to find that in addition to the mass in the center of his brain he also has a condition called Neuronal Migration Disorder. This was found by the Mayo Clinic in in September of 2015 and although it was present on previous MRIs, it often takes a specialized neuro-radiologist to catch such subtle changes in brain tissue. Grey matter heterotopia means that as he was developing, the grey matter in his brain did not migrate out to where it should as he was developing. So, essentially there are bits of brain where there shouldn't be that type and it makes his brain misfire. Our Neurologist at Mayo felt that this condition was the fundamental cause of our son's seizures, developmental delays and his intellectual disability. In addition, Abram never really gets any rest due to independent discharges in his brain where the neurons get interrupted by the misplaced brain matter and it has caused him major issues in the ability to retain language.
Abram has Sensory Processing Disorder as well and has been in various therapies since he was just 10 months old. He finally walked at 2.5 (the best Christmas gift ever in 2014) and he is currently in Occupational Therapy, Speech Therapy and Feeding Therapy at a private facility called ChildServe (a non-profit organization that helps children with special health care needs). He is currently still non-verbal at 4 but he can sign most of his wants and needs and is working hard at re-learning many things after his last bout of Neurological issues in March of 2015.
In May of 2015, we were told by our Neurologist about a medicine called CBD, a form of cannabis oil. After Klonopin caused more frequent and new seizure types and adding in another anti-epileptic drug called Keppra worsened his condition, we decided on trying cannabis oil in June of 2015. He has been seizure-free ever since.
Many people mistakenly think that because CBD is legal in our state that it is "easy" to get a card. This is absolutely untrue: it took us seven months of advocating with our lawmakers and multiple diagnoses from three different Hospitals to receive the required medical diagnosis of "intractable epilepsy" and the ability to gain access to Iowa's Cannabidiol Registration Card. When we started, our local Children's Hospital would not support this type of medicine without FDA Approval and were in essence blocking an entire Pediatric Epilepsy Community from having legal access without a Neurologist's recommendation. Up until last year, they even had a paid lobbyist fighting our efforts at the state house. However, I have since heard that there are a few patients receiving approval from this Hospital so I'm hoping this is a positive change and a step forward as CBD-only laws and hospital stances against natural medicines are forcing parents to be criminals and it isn't right!
As I write this, our child is nearly 18 months free of physical seizures thanks to cannabis. We are working with our legislators at home and in DC to legalize medical cannabis so everyone can have access. CBD-only laws are failing our sick and suffering across the country. Everyone deserves access to whole-plant cannabis.
Please, join us on our journey and read our Blog! With a lot of hope, love, patience and hard work, we are going to make sure that our little boy has the best quality of life possible. We created this website as a way for our friends and family to keep up our son. We are thankful for all the kind words, gestures and time that people are taking to help us keep our heads above water. We love you.
Our little "Wizard of Awws"
Another thing you might want to know about our son is that Abram is also an internet sensation! So, you just may recognize him already, without even realizing it.
These images went viral back in May of 2013 after someone stole them from my Facebook page. Don't worry, it's just eyeliner and it was our little family's way of bringing some harmless humor into our lives after the bad news we kept on getting. I can't believe that nearly 4 years later, it is still getting passed around in many tongue-in-cheek posts about why you shouldn't leave the baby with dad.
It blew my mind to see MSN.com do a little write-up on him that has since been taken down. Due to all the hateful responses and claims of child abuse, my son's story then caught the attention of HLNTV/CNN where a nice man named Craig wrote a story about our family!
These images went viral back in May of 2013 after someone stole them from my Facebook page. Don't worry, it's just eyeliner and it was our little family's way of bringing some harmless humor into our lives after the bad news we kept on getting. I can't believe that nearly 4 years later, it is still getting passed around in many tongue-in-cheek posts about why you shouldn't leave the baby with dad.
It blew my mind to see MSN.com do a little write-up on him that has since been taken down. Due to all the hateful responses and claims of child abuse, my son's story then caught the attention of HLNTV/CNN where a nice man named Craig wrote a story about our family!