Seems like telling our story is a good place to start. After years of efforts to start our family, Buddy (name changed for his privacy) came into our lives through adoption. He has a lovely birth mother who made a difficult choice for his future and allowed us to become his parents. She did everything right and his birth was healthy. Unfortunately, there are no promises in this world. Six weeks later he had his first seizure. It took only a week to diagnose this in part because we filmed an episode. When the ER docs saw the video they admitted us and rushed a 24hour EEG (pictured here).
It was a horrible 24 hours. He had a seizure within the first couple hours and we were told without a doubt that he had a seizure disorder. It seemed our son was an over achiever, he kept seizing...every hour on the hour some lasting 20 min and requiring rescue meds. By noon the next day we had tried several meds and were in the ICU. This is what our life would be. Watch for a seizure. Stop the seizure. Track the seizure.
We are incredibly lucky that we live near a Children's Hospital and we fell in with some amazing Doctors, nurses, dieticians, and therapists. Without them he may not have survived. Still at 6 months we were running out of options. We decided to try the KetoGenic Diet. This is a high fat diet which somehow changes the chemistry in the brain to help control seizures. For us it worked. It took a while and a bit of futzing with meds, but we are now on our longest break from seizure by far and praying to never see one again.
Since getting a break from the seizures and the meds, Buddy has started to make milestones, slowly and very much at his own pace, but he is making them. Buddy is now able to crawl, laugh, hold his own bottle, do a couple simple signs, and much more. We have challenges ahead to be sure. Because of all of the trauma, Buddy has been left with low tone a form of CP, Cortical Vision Impairment, he does not yet talk or walk. I have faith that he will do all these things, in his own time and in his own way.
During this journey I have been challenged to find ways to transform the world we live in to better receive my son, and to make it easier for him to receive. I have adapted many things from my thoughts and internal landscape to his toys and his external landscape. I plan to use this space to reflect and share on all these changes and challenges. Thank you for taking the time to walk along with us if even just for a bit.
It was a horrible 24 hours. He had a seizure within the first couple hours and we were told without a doubt that he had a seizure disorder. It seemed our son was an over achiever, he kept seizing...every hour on the hour some lasting 20 min and requiring rescue meds. By noon the next day we had tried several meds and were in the ICU. This is what our life would be. Watch for a seizure. Stop the seizure. Track the seizure.
We are incredibly lucky that we live near a Children's Hospital and we fell in with some amazing Doctors, nurses, dieticians, and therapists. Without them he may not have survived. Still at 6 months we were running out of options. We decided to try the KetoGenic Diet. This is a high fat diet which somehow changes the chemistry in the brain to help control seizures. For us it worked. It took a while and a bit of futzing with meds, but we are now on our longest break from seizure by far and praying to never see one again.
Since getting a break from the seizures and the meds, Buddy has started to make milestones, slowly and very much at his own pace, but he is making them. Buddy is now able to crawl, laugh, hold his own bottle, do a couple simple signs, and much more. We have challenges ahead to be sure. Because of all of the trauma, Buddy has been left with low tone a form of CP, Cortical Vision Impairment, he does not yet talk or walk. I have faith that he will do all these things, in his own time and in his own way.
During this journey I have been challenged to find ways to transform the world we live in to better receive my son, and to make it easier for him to receive. I have adapted many things from my thoughts and internal landscape to his toys and his external landscape. I plan to use this space to reflect and share on all these changes and challenges. Thank you for taking the time to walk along with us if even just for a bit.
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