Hopefully this is a step in the right direction

Emmett didn't make it to school today again, because he's not feeling well. I've been running around this morning but I've got a minute to publish an update before I go walking. Elliott got to school on time and without issue. Gavin's bloodwork was drawn and we are waiting for his numbers to come back. I'm unsure of where we stand in regards to his numbers right now, so I'm a bit nervous for those results. Gavin's becoming increasingly frustrating to work with on his IVIG infusions because he wants things done a certain way but unfortunately, it doesn't work like that. There's some flexibility within the IVIG infusion process but there are fundamental parts that include zero amounts of wiggles room. That being said, once his infusion was started,…

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Dry air makes it so hard for me to sleep

I had a rough time sleeping last night. Majority of the problem was related to the air being so dry, it made me really stuffy and that always makes it hard for me to sleep. It's like a fricking desert. Around 2 AM I ended up downstairs on the couch. Its easier to breathe down there for some reason. I need to put the humidifier on the second floor because that should make a difference. I didn't end up fall asleep with Ruby curled up next to me. Thankfully, the boys are at Lizze's parents house, so I was able to sleep in. Gavin didn't need anything this morning and I wasn't disturbed. All we have to do today is take Lizze to the dentist, get stuff for the boys…

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Doing right by Gavin for his 18th birthday isn’t as easy as it sounds

Gavin will turn eighteen in a few days. To be honest, that's a pretty big deal for a number of reasons. The most obvious is that he's physically made it to eighteen and I say that because of his fragile health. He's had some close calls over the years and there were times we weren't sure we would ever see this day. Instinctively, we want to make a huge deal out of this day. We want Gavin to have the best birthday of his life thus far. There are so many things that Gavin will never be able to celebrate. Things like high school graduation, getting his driver's license, going to college and truly living on his own. As much as we want to through a huge party for him…

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Ruby fell asleep on my lap

So I've found a new subject for my amateur photography hobby. Right now I'm loving taking pictures of Ruby. For one thing, she's adorable and the other is she's super cooperative. ☺ The ferrets are impossible to photograph clearly because they never stay still. I need a way better camera to capture them. Perhaps someday... ☺ Anyway, I took this one of Ruby while she was napping on my lap this afternoon.

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When your child with #Autism turns 18 and you need to obtain legal guardianship

Gavin will be turning eighteen years of age on January 18th. Unfortunately, he's unable to survive on his own and is also unable to make his own decisions, at least not without major help. His cognitive ability is continually declining and we have no choice but to seek permanent guardianship over him. We've never been through this process before but have acquired the paperwork and have the appointment with his psychiatrist to fill it out. I hate the idea of having to do this but it's unquestionably in Gavin's best interest. My goal is to share this new journey and help provide insight into this process. It's important to understand that not all kids with Autism will need something like this when they turn eighteen. Gavin is severely cognitively impaired…

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It’s worth swallowing my pride

I weighed myself today and I'm down two pounds. It's important to understand that whole this is a good thing, I actually gained over the holidays. I actually hit 333 lbs over Christmas. I'm not entirely sure what happened but part of that was poor choices and the minor surgery I had in my back right before the holidays. Anyway, I've been watching what I eat, when I eat it and I'm trying to be more active. As a result, I'm once again moving in the right direction and I feel good. I'm fucking sore from working out but I feel good. The one thing I'm really trying to focus on has to do with eating late at night. It's usually stress related and hard to resist but I'm really…

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3 pictures of moments that made me smile

We all have our good days and our bad days. Yesterday was a blend of both good and bad but there were also some bright spots as well. I wanted to highlight a couple of these bright spots because they made me smile. First up is courtesy of Mr. Gavin. His new IVIG infusion pump finally showed up and he was able to use it for the first time tonight. He was excited and it was a pretty good infusion.. ☺ Gavin killed me with his super serious face but whatever... He's happy and that makes me happy. ☺ The final bright spot took place much later and was signed, sealed and delivered by Mr. Emmett. I mentioned in the previous post that Emmett wasn't feeling well last night. He…

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