Please join Josie, Sophie & myself in wishing the best wife, mom and friend evar a Happy Birthday! We hope it's your best yet.
March 2009 Archives
Please join Josie, Sophie & myself in wishing the best wife, mom and friend evar a Happy Birthday! We hope it's your best yet.
Sophie has been planning out who she's going to marry for some months now. It started, of course, with her daddy. "When I grow up, I'm going to marry you Dad." It's such a sweet thing. Then she spent some extended time over at our friends' house and decided for several months, that she was going to marry their son, Dommy. We were even discussing dowry arrangements when all of the sudden she came home with someone new. Then it changed the next day. Then, much to my dismay, the next day it progressed into this.
Mom: Did you wear any costumes at school today? (it's a very common thing)
Sophie: Yes but I didn't wear the tiger suit, I wore a wedding dress. And I got married.
Mom: Who did you get married to?
Sophie: Sib and then we kissed.
Mom: (WTF???) On the mouth?
Sophie: Yes, after we got married we kissed and Sib told me I looked beautiful.
Mom: Well, I think we should just pretend kiss people at school from now on. Don't really kiss on the lips. Ok?
Sophie: But did you kiss dad when you got married?
Mom: Yes. But mommy and daddy were grown ups when we got married and we were in love.
Sophie: I LOVE Sib.
Mom: Well, you are still too young to get married so no more kissing people on the mouth.
I savored telling Jake this story at dinner. His eyebrows would have lifted right off of his face if it were possible.
I walked in to Sophie's Kindy the next morning, not really thinking much of it. I noticed one of the teachers having a serious conversation with another mom. The teacher was listening to the mom but kept eye contact with me. "Oh, well here is Sophia's mum." I looked down to see Sib bouncing around the mom. Apparently, Sib got home and couldn't stop talking about Sophie. He wanted to call her as soon as he woke up. Then when he arrived at school and she wasn't there, he was very upset and disappointed. I let them know about the kiss (which was news to both the teacher and mom) and that we had the conversation about no more kissing. The teacher said she would keep an eye on them and Sib's mom said to call her if she needed to come down and get Sib. Why do I get the feeling people are blaming this on Sophie?
So when I picked Sophie up I casually asked her about the costumes again.
Sophie: Oh, I didn't wear the wedding dress today and I didn't kiss Sib. We just cuddled.
Mom: (Oh GAWD)
Good ones! I put a bunch of new pics up tonight for your enjoyment, including some superheroes, more slip'n'slide, a new visitor, our visit to Isengard and more peanut butter chocolate cake.
Happy St. Patrick's Day everyone!
Josie started a third medication (Lamotrigine) on Monday, after reaching the maximum dosage for her weight of the first two anticonvulsants without achieving seizure freedom. She is starting at a low dosage because of the potential harmful side-effects, so it will be at least a month before she is at a dose that might help her. It will be 3-4 months before she reaches the maximum dosage for her weight, after which she will be admitted to the hospital again to start the ketogenic diet.
Other than "the break" (how we refer to those blissful 19 days she was seizure-free) and a brief 3-day period that followed, she's been in roughly the same state since mid-October: averaging 20 absence and drop seizures per day, generally lacking in attention span and often having difficulty getting words out or holding prolonged conversations. The break definitely gave us a clearer picture of how much the epilepsy is affecting her, as during this period she was voraciously absorbing books (asking Brandie to read her four in a row, with rapt attention) and carrying on extended conversations with fairly complex trains of thought.
We've come to refer to her states as "cloudy" and "clear", as she seems 'not present' even when she is not visibly having an absence seizure. It's hard to say how often she is actually seizing, as her EEGs have showed several minutes of activity when we were only witnessing a brief 3-5 second event, but it seems to be a lot of the time. She is understandably frustrated by it, and frequently becomes inconsolable by small things. At times she doesn't like to be touched and pulls at her hands when she is frustrated, as if trying to pull something off them. She also doesn't like to wear her shoes, which thankfully isn't the worst thing here in the land of bare feet.
It probably goes without saying how bittersweet it has been to see her seizure-free and know she is in there somewhere struggling to get through the electrical storm in her brain, and how disappointing and frustrating it is to have gotten that window only to have it slip away again. At this point we're not sure what the odds are of the next medication working given that she seems to have rapidly developed a tolerance for the Epilum, but we think it's somewhere around 5%. But thankfully, hope springs eternal and we will keep trying whatever we can to connect with her during those blissful clear parts of her day and shepherd her through the cloudy parts.
Other than "the break" (how we refer to those blissful 19 days she was seizure-free) and a brief 3-day period that followed, she's been in roughly the same state since mid-October: averaging 20 absence and drop seizures per day, generally lacking in attention span and often having difficulty getting words out or holding prolonged conversations. The break definitely gave us a clearer picture of how much the epilepsy is affecting her, as during this period she was voraciously absorbing books (asking Brandie to read her four in a row, with rapt attention) and carrying on extended conversations with fairly complex trains of thought.
We've come to refer to her states as "cloudy" and "clear", as she seems 'not present' even when she is not visibly having an absence seizure. It's hard to say how often she is actually seizing, as her EEGs have showed several minutes of activity when we were only witnessing a brief 3-5 second event, but it seems to be a lot of the time. She is understandably frustrated by it, and frequently becomes inconsolable by small things. At times she doesn't like to be touched and pulls at her hands when she is frustrated, as if trying to pull something off them. She also doesn't like to wear her shoes, which thankfully isn't the worst thing here in the land of bare feet.
It probably goes without saying how bittersweet it has been to see her seizure-free and know she is in there somewhere struggling to get through the electrical storm in her brain, and how disappointing and frustrating it is to have gotten that window only to have it slip away again. At this point we're not sure what the odds are of the next medication working given that she seems to have rapidly developed a tolerance for the Epilum, but we think it's somewhere around 5%. But thankfully, hope springs eternal and we will keep trying whatever we can to connect with her during those blissful clear parts of her day and shepherd her through the cloudy parts.
