Maintaining hope in the face of such a dire prognosis

There's no school today because God hates us. I'm kidding, I'm kidding. It's the end of the grading period and it's an in-service day for the teachers. I'm not planning anything for today because I want to try and keep it as low key as possible. Gavin's dealing with a lot of confusion and low key will help to keep him for getting worked up. We have an upcoming appointment with his Psychiatrist and this will definitely be the main topic. In fact, if this gets any worse, we're going to get him an emergency appointment. I don't think there's anything we're going to be able to do but we will always try. It's not easy to maintain hope in the face of such a dire prognosis but what other…

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I’m so happy for Gavin

I'm writing tonight to share something cool that happened today. Gavin's huge into My Little Pony and they characters play a big role in his Schizophrenic hallucinations. Aside from Sonic, they actually play the largest role on his team of super best friends. For the last few months, he's been so excited about the new My Little Pony Movie that was just released in theaters. Every time he meets someone, he shares how excited he is about seeing it. This afternoon, Lizze's Mom picked Gavin up and took him to see it. I guess it was just her, Gavin and some other dude in the entire theater. Gavin ended up spending the rest of the day with his Grandma. When he came home, he was so excited to tell us…

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Should I worry about this, because I don’t know

Gavin and I went to get the damages to the car looked at today. Incidentally, there was over $1,500.00 in damages because some asshole felt the need to fuck with our car. That's really frustrating but at the end of the day, the car is a thing and what I'm about to share with you is so much more important. While we were on the way to have the car looked at, Gavin unloaded everything that had recently happened on me. You've heard of people having a dream inside of a dream right? I don't know how common that it but I've had dreams inside of a dream before, as have many others. The reason I ask is because understanding that will help you to better wrap your brain around…

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I feel so helpless

I'm really getting worried about Gavin. He's definitely slipping in several key areas of his life, despite how hard I know he's trying. 🙁 It breaks my heart to see him struggle the way he does. Saturday was a ton of repetitive talking and question asking because he couldn't remember a great of what was going on. I'm not sure how else to explain it. He would ask a question, to which he'd already been told the answer (often several times), and when I answered him again, it was like the first time he was hearing it. I feel so helpless because there's nothing we can do to prevent, slow down or put a stop to this downward spiral of cognitive ability.

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Gavin’s not doing so well and here’s what’s going on

I was running some errands yesterday and Lizze called me. She was concerned because she's noticing that Gavin's appearing to be more confused than he normally is. I don't remember exactly what she said had happened but I've noticed it as well. In the morning, I'm going to call Dr. Reynolds because I don't know if this is related to the changes in his meds or if this is a natural trend that would be happening regardless. Some of the things I've been noticing is how much he struggling with very simple tasks. We've been avoiding assigning complicated or multipart tasks to Gavin because they are simply outside of his ability. Lately, one step tasks have been proving to be problematic. Yesterday, I handed Gavin a replacement toothbrushe and asked…

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Major Gavin Update: Clozapine change

You may remember that we began reducing the amount of Clozapine he's taking to manage the symptoms of Schizophrenia. Due to negative side effects that involve serious issues with his blood, we are reducing the dosage. Before we left for Florida, we worked with Dr. Reynolds to move Gavin from 600 mg/day to 500 mg/day. We didn't notice any Earth cracking changes and so once we returned from our trip, we made the next move. As of Monday morning, Gavin is only taking 400 mg/day. We haven't noticed anything at this point, that would make us want to return to the higher dose. That doesn't mean we aren't seeing concerning regression, because we are. The thing about the regression is that it's not likely tied to the Clozapine or the…

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Day 2: We’ve made it to Florida for Gavin’s Wishes Can Happen trip

It's about 11:30 PM and we are settling into our room in Daytona Beach. We were and frankly still are floored by our room. Our hotel is literally on the beach. I can stand on our balcony and throw a rock into the ocean. As I'm sitting here, I can hear the waves crashing into the shore. I suppose I should mention that we are dealing with unpleasant weather. It's been storming for the second half of the day and it's way worse than anything we see in Canton, Ohio. The wind is really strong but it's only a tropical storm. I can't even fathom what it's like during a hurricane. The boys are freaked out by the weather but have settled in for the night and Lizze is reading…

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Why Gavin having his wish granted is heartbreaking for me as his Dad

By now most of you know that Gavin is having his wish granted by an amazing organization called Wishes Can Happen. He qualifies for this because he's living with life threatening health conditions. This opportunity is probably one of the biggest things to ever happen to my family and Gavin absolutely deserves this. Every time someone hears about this, their response is usually along the lines of that's so amazing or he's so lucky. I've even heard things like what a blessing and what a great opportunity. None of those things are wrong. It is an amazing opportunity and we do consider it a blessing that this has been made available to Gavin. I don't take offense to the well intentioned affirmations but I want to make clear that this…

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