Read more about the article It’s all about Gavin this morning
Gavin / My thoughts

It’s all about Gavin this morning

Gavin's bloodwork is done for the week and I'll follow up with the pharmacy this afternoon. I need to remind them to have his medication delivered by Wednesday evening. There's plenty of time for them to get the results and gain approval in order to release another seven days worth of pills. Next up for the day is Gavin's IVIG infusion. We actually just received a resupply of his infusion meds on Friday and so we are good to go for the next thirty days. They've been doing a lot better with Gavin's infusion supplies lately and that's awesome. As a parent, it's stressful enough just knowing your child has all these life threatening health conditions. Worrying about if/when their medications will arrive and arrive correctly is just that much…

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January 29, 2018
Read more about the article It seems Hell may just have frozen over
Clozapine / Gavin / My thoughts

It seems Hell may just have frozen over

For the very first time in weeks, we had something happen that hasn't happened in a long time. That something is Gavin's Clozapine prescription being delivered on time. That's right, Gavin's seven day supply of Clozapine showed up on time. This is a big relief because his Clozapine is extremely time sensitive and he can't miss a single dose. He only gets seven days worth of pills at a time and this is a very dangerous medication. I'm really grateful that everything just clicked today and I definitely give credit to the pharmacy for making sure this happened. I'm hoping this is a sign of things to come... ☺

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January 24, 2018
Read more about the article Sadly, he’s hearing voices again
Gavin / My thoughts / Schizophrenia

Sadly, he’s hearing voices again

Gavin had a pretty good day, at least physically. On his first full day of being an adult, he spent a large part of it hearing voices. Gavin's was officially diagnosed with Schizophrenia a few years ago. This is far from the first time Gavin's heard voices. In fact, he sorta lives in a perpetual hallucination. He has friends that only he can see and he goes on dangerous missions with them on a daily basis. These are the typical voices he hears. Unfortunately, what we're seeing now is that he hears us talking to him when we aren't. He's constantly keeps finding us because the says we called for him. I'm not sure what's going on with this but it's not something that's been very common over the years.…

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January 20, 2018
Read more about the article Why is this so fucking complicated?
Clozapine / Gavin / Medication Management / My thoughts

Why is this so fucking complicated?

The goddamn pharmacy didn't get Gavin's Clozapine filled in time for the second week in a row. This is very time sensitive and it's in a set schedule. Gavin gets his bloodwork done on Monday or Tuesday and they pull the labs Tuesday afternoon. The script gets filled and delivered by Wednesday afternoon. It's really not that complicated because it's the same thing each week. I made several phone calls at the beginning of the week to ensure everything was in order. I even called late Tuesday afternoon to remind them to call for the labs and make sure the script was either ready for pickup or delivered by Wednesday afternoon. I was assured this wouldn't be a problem. Thankfully, we have an emergency supply to cover for disruptions like…

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January 18, 2018
Read more about the article Dry air makes it so hard for me to sleep
My thoughts

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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January 15, 2018
Read more about the article Doing right by Gavin for his 18th birthday isn’t as easy as it sounds
Autism Parenting Insight / Gavin / My thoughts

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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January 14, 2018
Read more about the article Ruby fell asleep on my lap
Family Pets / My thoughts / Photography / Ruby

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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January 14, 2018