happy being trevy

Our day started with a two minute seizure.  A seizure which stole energy and joy from him for hours and destroyed my well-laid plans for the day. His short seizures don't physically phase him much. He has one. He moves on. These longer (anything over a minute) events lay us all flat, even when they only two minutes in length. Thankfully I caught this one on camera for his neurologist. She hasn't observed this presentation yet and asked us over the weekend if we could try to catch one. We only caught 10ish seconds of the seizure event itself, which is noted right at the beginning of the video. But also his postical period of slurred speech and confusion is important information to have and see.   After the seizure passed, and I caught my breath again, I proceeded to finish the interrupted math lesson with his sister.  I let him lay on the couch watching Curious George. Honestly, I would have let him watch all day long if he needed to, but after ...

Contrary to how it might appear, he found her weight quite comforting. "Amazing!" in his own words, actually. I'm here thinking who needs to spend money on a weighted blanket when you have a big sister? 

Around 7:30 this morning Trevor had one of his scary seizures. His big brother was giving him a shower. Trevor had just stepped out when I heard the call. I sensed immediately by Toby's tone that it was a big one and he was scared. The trouble with the big seizures is that Trevor is completely non-responsive and , at times, combative. I wrapped my arms around his dripping, little body and held the Frankincense to his nose. His lips weren't blue, but he didn't appear to be breathing. He was frozen. Eyes wide, blank orbs. Mouth agape. Drool beginning to pool on his lower lip. He was a statue. When he's completely gone like this it seems to take longer for the Frankincense to work. I've wondered if perhaps it's because he's not actively smelling. I hope that's the case and not that the benefit we were seeing was a honeymoon period. Suddenly he was pushing my arms away. Still not responding, but at least moving again. Thankful that he's still small of...

Trevor was having a particularly rough morning. He'd logged two seizures already and was hyper focusing on how to get money to buy new Wii games. It was making him miserable and I had him lay down on the couch until he was ready to move on to lessons. He usually helps me with laundry as part of his daily routine, but he was in no position to be helpful this morning. Toby was needing a mental break from his studies and offered to sit with his brother while I ran to the basement to finish the load I was working on.  When I came back upstairs I found Tobin holding Trevor in his arms telling him how much he loves him. It wasn't just words. Evident from his tone of voice and his body language was the passion flowing form him. As if he were trying to make sure Trevor never forgets his words. As if he were trying to sink those words down into his brother's marrow. It was incredibly, movingly sweet.  This has been a year of soul growth for Tobin. The borders ...

Bristel offered to tuck Trevy into bed tonight. Her eyes were shining when she came back downstairs and declared him the cutest kid ever. She'd told him that sometimes she comes and checks on him while he's sleeping. That she even gives him a kiss on the cheek, but he doesn't ever wake to know it. He was very confused why she would "look at" him while he was sleeping, so she confided that she worries about him sometimes. As she was leaving the room he said, "Bristel, you no look me when I sleep tonight."  She asked him, "Why, Buddy?" "Because I be okay," he reassured her. And that was when, she says, her heart melted completely.