happy being trevy

Trevor has the sweetest, most insightful conversations while on the swing. I'm convinced all of his speech work should be done while swinging! When the sun is shining, he loves to head outside first thing in the morning. It's peaceful swinging and listening to the world wake. He craves feeling peaceful. We have a variety of songbirds in our neighborhood and their cheerful voices never fail to gladden our hearts.  This morning Trevor shared, his words far more adorable than my reinterpretation, that it's confusing to him how he's "a kid with words" but in the mornings he forgets them all until about 10 o'clock, at which time they return to him. He went on to express confusion about being able to remember some words, but not all. He shared that it's frustrating, though his grin and dismissive laugh revealed that he's handing his frustration really well. After pondering for a minute I thought to ask him if he knows the words he want...

Standardized testing is hard... Swinging between sections helps! I've decided to administer the California Achievement Test with Trevor this year to give me a good snapshot of his skills. Though he's entering 5th grade, I've opted to use the 2nd grade testing. It's a good representation of his abilities and I'm a big believer in setting him up for success. We're using the online version and I'm providing support by operating the computer and reading as needed. He's really required minimal support and could probably do the computer himself as well, but being an entirely new format for him I've decided it's best for me to manage. He was tired, but in an excellent mood! I think he actually kinda likes doing the testing with mom. It's something different and he's feeling proud of himself because he knows he's answering a lot of the questions correctly. Especially in the math section. He even blew me away with some...

This Trileptal increase has been so hard on him. He's exhausted and cognitively sluggish. I gave him a pass on his school work last week, which is to be expected when one spends their days in bed. Sigh.  I am determined to push through this week, starting with today. There were tears, and not just his either. Oh how my heart aches for him. He just wants to be a little boy. There was much dissenting discussion around the topic of school work. He impressed me with his ability to articulate how he was feeling, and thereby self advocate. The sentence structure might have been imperfect, but I fully understood that he felt tired, sluggish, and frustrated. I fully understood that he feels writing and reading are particularly difficult for him, especially when he feels medicine tired. I listened to his heart. It was really the sweetest thing the way he spoke, tears wavering, and sighed, and looked relieved that I was really letting him vent.  After hearing him out, I opt...

It seems every post I write these days is lament filled. I hate that. I don't want to be sad, defeated, exhausted from depression, anxiety, and stress, but I am committed to being honest.  This might be uncomfortable, but this is honest. If the seizures don't knock him down, rest assured the meds will.  Below is what a medication increase looks like. Notice the similarities to postictal events? This is one depiction of why I am desperate for non-pharmaceutical treatments.  Quality of life matters. Pharmaceuticals have their place. I would never want to withhold them, t hough many are artificially withheld due to pricing . Even still, we use them because we must. But when you've tried over a dozen with varying degrees of success, none permanent, all with significant side effects, it's time to move on. It's time to get creative. Quality of life matters. This is no way for an eleven year old boy to live. Spending half his...

Yesterday started with a long seizure which left Trevor on the couch for most of the morning.  He's started perking up a bit by mid morning. We were able to do a little math, reading, and writing with relative success. At his suggestion we even walked up to the local corner store for his daily dose of sunshine.  After his daily rest hour he was attacked with another seizure, longer and stronger than the first. It often seems like he's not breathing during his complex partials, but this was the first time his lips turned blue. It was just Bristel and I at home. To say we were terrified would be an understatement. I keep a pulse ox in our emergency backpack, which I'd grabbed. The pulse ox revealed that his oxygen was quite low, reading between 60-70 for a minute. His heart rate was erratic. His lips pinked back up, but his oxygen stayed in the 80s for quite awhile after his seizure. I've suspected for quite awhile that he's ex...

Trevor was one of just seven patients to participate in a brain stimulation study (tDCS) at Boston Children's. The good news was the treatment was effective. He wasn't seizure free, but we noted significant reduction in intensity along with a decreased number of events daily. The less than stellar news is now that we're home we're watching him slowly spiral back to his baseline. The hope is that we'll soon be able to access the treatment at home, but we do not have a timeline on this. The picture below was taken after a two minute seizure left him an exhausted postictal mess for hours. He's often sleepy after the larger events, but this was the first time he actually fell asleep. As you can well imagine, our emotions have been a swinging pendulum. Across the main road and up the hill sits a cemetery. If you're brave enough to trudge up to the top of that cemetery hill you'll find one of the most breathtaking views of the East Bay...