Kelsey got so close to being able to drive again, just had another 2 months to go until freedom, but as is her pattern she had a seizure on July 5. That means another six-month countdown. I believe that she is having many more seizures than we are aware of . While we were on vacation I had the opportunity to watch her sleep and again while we were visiting my dad this past weekend. She jerks and twitches and moves constantly in her sleep. I’m not talking a little twitch here and there, but full on rhythmic jerks that last anywhere from 30 to 90 seconds. They aren’t the convulsive, whole body seizures, but might be her arm or leg moving in a rhythmic pattern or her arm and hand “floating” above her body. And after a BRIEF respite (maybe 30 minutes), she does it again. And again and again and again. I am convinced that these are sleep seizures. Every once in a while she will wake up in the morning with sore muscles and a bloody tongue and then we know for sure, but with these more mild events it’s hard to tell.
Her neuro started her on Vimpat a few months ago and it seemed to decrease the frequency of her seizures to a degree. We have at least been able to take her off of the Lyrica and the Zonegran with the addition of the Vimpat. She still takes Keppra and Lamictal, as well, but her response and reaction times have improved to some degree.
I don’t know if this is ever going to be something that she can conquer and like I’ve said before, my heart hurts for her. Between all the surgeries, the VNS, and the meds you would think that SOMETHING would work better. But no. As she moves farther into young adulthood, the possibility of SUDEP crosses my mind more and more often. While it’s not something that we speak about, it is a concern that I’ve shared with my husband on more than one occasion. Sometimes this disease really sucks the life of her and sometimes this disease just really sucks overall.
Monday, July 16, 2012
Monday, January 30, 2012
Weekend From Hell
Here's a day-by-day recap.
Friday: The Dog Tried To Kill Me
I am nearly blind without contacts or glasses and like most middle-aged people who are in this predicament I have learned how to navigate my way to and from the bathroom in the middle of the night with no sight. Most nights, this happens with a minimum of injury. This past Friday night my dog tried to kill me by lying directly in my path. As I was gingerly trying to step over what I knew to be her sleeping blob at the foot of my bed, she nervously tried to move out of my way. Her huge collie-butt collided with my size 8 foot and I catapulted myself over her so that I wouldn’t hurt her when I went down. When it was all over and done with, I sprained my knee and my elbow and have some pretty serious rug burn on my cheek and eye socket. I really think I might have gotten a hairline fracture of the cheekbone, but never did go to the ER to get it checked out. As she is getting on in age herself, I have cut her some slack in her previous murder attempts at night. This time all the animals got a life sentence of no more sleeping in my bedroom at night. Of course, this translated into all of them waiting breathlessly at the door just waiting until someone opened it up enough for them to make a mad dash through the opening and my husband and I opening the door just enough to toss them back out (repeat endlessly throughout the weekend).
Saturday: Shuffled Along Like an Elderly Woman
Due to the injuries from the night before, the pre-existing mid-back arthritis and disc issues, I walked through Saturday like some old, decrepit, foot-in-the-grave woman. I was moaning and groaning my way through the Farmer’s Market, turning heads with my brilliantly colored rug burn that was not very well covered by makeup. Every time I dropped something I had to estimate the value of the item being picked up against the pain I would incur by actually trying to bend over. I left a trail through the market, let me tell you, but I survived the day. I made sure I survived the night by taking some pain-killers and going to bed.
Sunday: Slicing Pineapple With My Thumbnails
On Sunday morning I decided I would like some fresh pineapple purchased at the market the day before. So I got out my handy-dandy, super sharp pineapple peeler/corer and merrily went about my business of slicing pineapple. It might have been the fact I just got out of bed, or the fact that I was hopped up on vicodin from all the injuries, but I totally wasn’t thinking when the base of the pineapple got stuck and I flipped over the corer to push it through. Yeah. A few choice words, tons of blood, and a box of bandaids later I was good to go. At one point, every member of my family had commented on my unusual grace and panache. I made it my goal to make it through the remainder of Sunday and into my bed without further injury.
Friday: The Dog Tried To Kill Me
I am nearly blind without contacts or glasses and like most middle-aged people who are in this predicament I have learned how to navigate my way to and from the bathroom in the middle of the night with no sight. Most nights, this happens with a minimum of injury. This past Friday night my dog tried to kill me by lying directly in my path. As I was gingerly trying to step over what I knew to be her sleeping blob at the foot of my bed, she nervously tried to move out of my way. Her huge collie-butt collided with my size 8 foot and I catapulted myself over her so that I wouldn’t hurt her when I went down. When it was all over and done with, I sprained my knee and my elbow and have some pretty serious rug burn on my cheek and eye socket. I really think I might have gotten a hairline fracture of the cheekbone, but never did go to the ER to get it checked out. As she is getting on in age herself, I have cut her some slack in her previous murder attempts at night. This time all the animals got a life sentence of no more sleeping in my bedroom at night. Of course, this translated into all of them waiting breathlessly at the door just waiting until someone opened it up enough for them to make a mad dash through the opening and my husband and I opening the door just enough to toss them back out (repeat endlessly throughout the weekend).
Saturday: Shuffled Along Like an Elderly Woman
Due to the injuries from the night before, the pre-existing mid-back arthritis and disc issues, I walked through Saturday like some old, decrepit, foot-in-the-grave woman. I was moaning and groaning my way through the Farmer’s Market, turning heads with my brilliantly colored rug burn that was not very well covered by makeup. Every time I dropped something I had to estimate the value of the item being picked up against the pain I would incur by actually trying to bend over. I left a trail through the market, let me tell you, but I survived the day. I made sure I survived the night by taking some pain-killers and going to bed.
Sunday: Slicing Pineapple With My Thumbnails
On Sunday morning I decided I would like some fresh pineapple purchased at the market the day before. So I got out my handy-dandy, super sharp pineapple peeler/corer and merrily went about my business of slicing pineapple. It might have been the fact I just got out of bed, or the fact that I was hopped up on vicodin from all the injuries, but I totally wasn’t thinking when the base of the pineapple got stuck and I flipped over the corer to push it through. Yeah. A few choice words, tons of blood, and a box of bandaids later I was good to go. At one point, every member of my family had commented on my unusual grace and panache. I made it my goal to make it through the remainder of Sunday and into my bed without further injury.
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