happy being trevy

By 10 am yesterday morning Trevor had so many seizures that I stopped tracking them for my own mental health. He has been a little more whiny and anxious than normal, but his neurologist just increased his Trileptal and he's extremely sensitive to changes of any kind. Also, he's averaging 5 seizures a day right now. Crankiness is a common side effect of seizures. He had no fever. He made no complaints. He's been eating and sleeping as normal. Just slightly more whiny and anxious. Increased seizures can be a symptom, but they are also often unexplained. So, we blame the moon, fatigue, changes in routine. Every mom of a child like Trevor knows what it's like to analyze every minutia of their lives in hopes of helping them and caring for them.  In retrospect, I'm kicking myself for not reading the clues. In an effort to increase his level of independence, I let him brush his teeth by himself in the mornings. Each night I lay him over my legs an...

I was composing a cute anecdote about our drawing lesson today. I purchased Mona Brooke's Drawing With Children over the summer and just implemented our first lesson today. He LOVED it. He made me laugh when, at one point, he turned to me and said "I'm not Bob Ross". It was post worthy.  I was almost done with my thread when the seizure struck. It wasn't obvious at first that it was going to be a big one. Then he started drooling. Profusely. And moving in bizarre, robotic, clearly neurological ways. When his body wasn't moving up and down, side to side, or twisting around, it was shaking violently. The front of his shirt was soaked through as the drool just kept running.  After his last large seizure we've started accessorizing with a stopwatch in lieu of a necklace. When I realized this wasn't going to self resolve quickly, I pressed the start button. At the minute mark I called for Toby.  I didn't say why, but I didn...

I've been feeling very defeated by epilepsy lately.  In addition to his daily 4-5 seizures, Trevor has had two of his larger events in the past two weeks. One of them resulted in calling rescue. Thankfully, the seizure broke before they arrived and we could decline a ride to the hospital. Even still. There are no words in our language to describe the groanings of our hearts during his big seizures and the aftermath is so very difficult to navigate emotionally.  I spent the weekend fighting off the frost of heart-numbness by revamping our school system. He's been so fatigued that focusing on specific subjects daily just isn't working. I've heard of and used loop schedules before but have never tried to loop everything . I decided that's what we needed to do. Just keep a looping list of every.single.thing and work through whatever we can each day. I needed to take the pressure off of both of us, while still pushing forward.  the loop list represe...

Trevor noticed my wet cheeks as I was scrolling through my FB memories this morning. Amongst others there were reminders that 8 years ago today he was in for phase one of his radical brain surgery . I'm not sure how I found the energy to post so frequently though I do remember it being a life-line while we were waiting. Though we were alone, just Jonathan and myself in the waiting room, I knew friends and family were with us in spirit and virtually. Reading those posts was hitting my heart particularly hard this year. Probably because we're dealing with an epilepsy relapse. Trevor noticed and asked why I was crying. I believe in honest answers to honest questions and so I told him that I was thinking about his brain surgery when he was a baby. He asked why his surgery made me sad. I tried to explain that I wasn't all sad, really, but I was remembering how nervous I was during his surgery. Of course he then wanted to know why I was so nervous. ...

Today has been one of those sweet, validating homeschool days. The weather is heavenly. The kids are getting along, or at least were at the time of this post. Studies have been flowing smoothly. Including Trevor doing a terrific job reading a new book! I can't helping thinking "I taught him that!" as I noticed his improved fluency. He adores the Billy and Blaze series, which is helpful. Pretzels, however, are distracting.  We were having such a lovely day that I couldn't resist catching another video, this time of our fine motor rock stacking workbox. I try to think of tasks that are practical and meaningful. Rock stacking is a thing in our neck of the woods. My hope is that working on this at home will allow him to participate with friends in a meaningful activity when we're out and about. He loves this task and was doing great. Until about the 7 second timecode, at which point you can hear him intake his breath, see him pause from his task, h...