It's been a few years since I updated via blog.... I kinda left you hanging during a vital part of our journey.
Last I wrote, Vegas was suffering from daily facial seizures, every hour. It was exhausting. We found a new neurologist that was closer and we took all our videos and notes to him. Needless to say.... he was impressed with my documentation and videos of his life. He told me that it was very possible Vegas had another neurological issue that was located in the same part of the brain that gave people Parkinsons. He wanted to put Vegas back on the Kbr (potassium bromide), but at 1/4 of the dose. He said he thought his body was screaming for it. So we did. I'm happy to say that 2 1/2 years later, we only have one of these issues every few days.
Vegas rarely has cluster seizures anymore, but they are still every 4 to 6 weeks.
Some of you know that the last year in particular has been hell for me. Losing my mom to breast cancer after fighting for so long is heartbreaking. To think....last year we did that photo contest and the members who wanted to participate sent in pink photos. I sat there helping her sort thru the photos because she couldn't operate the touch screen on the Ipad. She was terminal and I had no idea. I often wonder if she was of sound mind during this time. I cry about it often wondering how hard it must have been to keep that from us...if it was her decision at all. Two months later I would have my last full conversation with her, hanging up the phone on December 18th. December 19th she was admitted into the hospital, December 29th we were told by her Dr that we had 2 weeks to 2 months with her. Admitting her into the Hospice House on Jan 1st then taking her home on Jan 25th. She passed on April 26th... Now, over 6 months later we are in court fighting to uphold my mother's will. Her husband of barely 7 years thinks that he deserves our childhood home. Oh...I forgot to tell you. This husband of hers? He lied to us. He walked into our lives with one suitcase, newly retired from the Marine Corps after serving 30 years. He was a Purple Heart recipient and he lost his best friend in Vietnam. None of that is true. He enlisted in the army in Feb 1971 and was discharged as a basic trainee 2 months later. He in not a Vietnam Vet. He never left the country. Never was a Marine. Never lost a friend. Never earned a purple heart.
Now he is claiming that he is owed the house because of omitted spouse. Which...he wasn't. We listed him in the Will as Jd. The name we have been calling him since day one. Apparently, that name was made up too. He is now claiming that he's not provided for in the will.
Way off subject... ugh. Sorry about that. Just this year alone, Vegas has suffered 11 grandmal seizures. Some of those had horrible post-ictal symptoms like pacing for HOURS. Some of them had absolutely no pre or post-ictal symptoms. Just recently he went 80 days without a seizure. June 19th to September 8th. Then another 37 days seizure free. October 15th he had a very mild Grand mal, he never even got up. 7 days later on October 22 he had another small grand mal where he never got up. 4 days later he had a pretty bad one where he was confused and running into the wall. He ended up pacing for over an hour before his brain stopped firing and he was able to rest. This happened less than 24 hours before the full moon.
So, we are good here. Orion is still the little pita she's always been. Bossy to the bone!
Last I wrote, Vegas was suffering from daily facial seizures, every hour. It was exhausting. We found a new neurologist that was closer and we took all our videos and notes to him. Needless to say.... he was impressed with my documentation and videos of his life. He told me that it was very possible Vegas had another neurological issue that was located in the same part of the brain that gave people Parkinsons. He wanted to put Vegas back on the Kbr (potassium bromide), but at 1/4 of the dose. He said he thought his body was screaming for it. So we did. I'm happy to say that 2 1/2 years later, we only have one of these issues every few days.
Vegas rarely has cluster seizures anymore, but they are still every 4 to 6 weeks.
Some of you know that the last year in particular has been hell for me. Losing my mom to breast cancer after fighting for so long is heartbreaking. To think....last year we did that photo contest and the members who wanted to participate sent in pink photos. I sat there helping her sort thru the photos because she couldn't operate the touch screen on the Ipad. She was terminal and I had no idea. I often wonder if she was of sound mind during this time. I cry about it often wondering how hard it must have been to keep that from us...if it was her decision at all. Two months later I would have my last full conversation with her, hanging up the phone on December 18th. December 19th she was admitted into the hospital, December 29th we were told by her Dr that we had 2 weeks to 2 months with her. Admitting her into the Hospice House on Jan 1st then taking her home on Jan 25th. She passed on April 26th... Now, over 6 months later we are in court fighting to uphold my mother's will. Her husband of barely 7 years thinks that he deserves our childhood home. Oh...I forgot to tell you. This husband of hers? He lied to us. He walked into our lives with one suitcase, newly retired from the Marine Corps after serving 30 years. He was a Purple Heart recipient and he lost his best friend in Vietnam. None of that is true. He enlisted in the army in Feb 1971 and was discharged as a basic trainee 2 months later. He in not a Vietnam Vet. He never left the country. Never was a Marine. Never lost a friend. Never earned a purple heart.
Now he is claiming that he is owed the house because of omitted spouse. Which...he wasn't. We listed him in the Will as Jd. The name we have been calling him since day one. Apparently, that name was made up too. He is now claiming that he's not provided for in the will.
Way off subject... ugh. Sorry about that. Just this year alone, Vegas has suffered 11 grandmal seizures. Some of those had horrible post-ictal symptoms like pacing for HOURS. Some of them had absolutely no pre or post-ictal symptoms. Just recently he went 80 days without a seizure. June 19th to September 8th. Then another 37 days seizure free. October 15th he had a very mild Grand mal, he never even got up. 7 days later on October 22 he had another small grand mal where he never got up. 4 days later he had a pretty bad one where he was confused and running into the wall. He ended up pacing for over an hour before his brain stopped firing and he was able to rest. This happened less than 24 hours before the full moon.
So, we are good here. Orion is still the little pita she's always been. Bossy to the bone!
