The adventures of Drake and Sushi.
Meet Drake and Sushi.
Drake was born in April 2008. He was welcomed home by his big brother, Kevin and we settled into the life of a family of four quite nicely. Drake was a little late on a few milestones, but nothing too concerning. But everything changed in January 2009 when Drake suffered his first seizure. After a trip to the ER, we were told it was a febrile seizure and chances are he'd not have one again. Exactly one month later, however, he had his second seizure. This time he required an ambulance ride, intubation at the nearest hospital and life-flight transport to the children's hospital. He spent a full month in the hospital, coming home 3 days before his first birthday. Nobody had any explanations for us. We were advised that he would need to be on anticonvulsants, which should keep the seizures fairly well controlled and he would most likely outgrow the seizures; after two years seizure free, we would be able to wean him off the meds. Unfortunately, for the next year and a half, we battled the seizures constantly. His seizure types were constantly changing and after several med adjustments, we still could not get them under control and his development was clearly being affected; by this point, he was delayed about a year in receptive and expressive language, gross and fine motor, and he wasn't "maturing" as a toddler should. I asked the neurologist to do a genetic test to look for a specific form of epilepsy that I had read about that sounded very much like what Drake was experiencing. In August 2010, we got the results; Drake has Dravet Syndrome. We now know that he will never outgrow this. He will be plagued by seizures and poor developmental outcome for the rest of his life. It is not likely that he will ever be independent.
Caring for a toddler can be trying in the best of situations. Caring for a toddler with Dravet Syndrome is a full time job. Drake requires constant supervision. Not only is there a chance that he may have a seizure at any moment, but he also lacks an understanding of dangerous situations. As a parent, trying to keep him happy and out of danger at all times can be exhausting and we worried that as Drake gets older, he would need more of a sense of independence (at least to be able to play in his room alone from time to time). With that in mind, we looked into seizure assistance dogs (before we had the official Dravet diagnosis even). Thrilled with the prospect of how much a specially trained dog could help us all, we set to work fundraising for a service dog from 4 Paws For Ability.
Sushi joined our family on December 10, 2010. We're still learning how to read her seizure alert cues, she's still learning the rules of our house, and she and Drake are slowly making progress with forming a bond. But already, she's been an amazing addition to our family! To stay updated on our adventures with Sushi, be sure to check out the blog.
Drake was born in April 2008. He was welcomed home by his big brother, Kevin and we settled into the life of a family of four quite nicely. Drake was a little late on a few milestones, but nothing too concerning. But everything changed in January 2009 when Drake suffered his first seizure. After a trip to the ER, we were told it was a febrile seizure and chances are he'd not have one again. Exactly one month later, however, he had his second seizure. This time he required an ambulance ride, intubation at the nearest hospital and life-flight transport to the children's hospital. He spent a full month in the hospital, coming home 3 days before his first birthday. Nobody had any explanations for us. We were advised that he would need to be on anticonvulsants, which should keep the seizures fairly well controlled and he would most likely outgrow the seizures; after two years seizure free, we would be able to wean him off the meds. Unfortunately, for the next year and a half, we battled the seizures constantly. His seizure types were constantly changing and after several med adjustments, we still could not get them under control and his development was clearly being affected; by this point, he was delayed about a year in receptive and expressive language, gross and fine motor, and he wasn't "maturing" as a toddler should. I asked the neurologist to do a genetic test to look for a specific form of epilepsy that I had read about that sounded very much like what Drake was experiencing. In August 2010, we got the results; Drake has Dravet Syndrome. We now know that he will never outgrow this. He will be plagued by seizures and poor developmental outcome for the rest of his life. It is not likely that he will ever be independent.
Caring for a toddler can be trying in the best of situations. Caring for a toddler with Dravet Syndrome is a full time job. Drake requires constant supervision. Not only is there a chance that he may have a seizure at any moment, but he also lacks an understanding of dangerous situations. As a parent, trying to keep him happy and out of danger at all times can be exhausting and we worried that as Drake gets older, he would need more of a sense of independence (at least to be able to play in his room alone from time to time). With that in mind, we looked into seizure assistance dogs (before we had the official Dravet diagnosis even). Thrilled with the prospect of how much a specially trained dog could help us all, we set to work fundraising for a service dog from 4 Paws For Ability.
Sushi joined our family on December 10, 2010. We're still learning how to read her seizure alert cues, she's still learning the rules of our house, and she and Drake are slowly making progress with forming a bond. But already, she's been an amazing addition to our family! To stay updated on our adventures with Sushi, be sure to check out the blog.
