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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Please keep Gavin in your thoughts

Gavin and I went to the grocery store this morning. All was going well until Gavin's leg stopped working correctly. Those were his words, not mine. The problem was/is that his legs were giving out on him. I can remember this happening before on many occasions, but it never lasted this long. There were times he was having to hold himself up by leaning on the cart. We've been home now for about an hour, and he seems to be doing better. He wanted to know if his legs were having seizures. I don't know what's going on with him because, in the past, no one's been able to figure this out. I'm hoping today's problems were just a fluke, and after some rest, he'll be doing better. It would…

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Gavin seems to be struggling more today, and it’s heartbreaking

Gavin's had a rougher day thus far. He seems to be on edge, but there's no apparent reason why and if you ask him, he says he's fine. He had his IVIG Infusion this morning, and per the current norm, he did it all by himself. Unfortunately, he ran into a few snags and rather than merely address them; he freaked out instead. One issue was that the one injection site was leaking a little bit. This happens, and all we have to do is create a better seal at the infusion site. Gavin knows this, but instead, he chose to remove the needle all together which meant it would have to be placed back into his belly. That means more pain, and I don't know why he did that.…

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#Autism Parenting: The Transition to Adulthood has Begun

It's going to be a slightly stressful day today because I have to meet with social security in regards to Gavin. Part of this is merely a routine review, but the other part of it is going to be dealing with Gavin turning 18 and me retaining my payee status over his account. I'm not worried about Gavin qualifying because he qualifies. I've just never had to do this before. It's the first time we've had to have one of these meetings as they only happen every so many years. Hopefully, this will be done in under two hours because otherwise, I'll be late getting the kids from school. Meeting with social security is the first of many steps we will have to take because Gavin has turned 18. The…

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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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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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It all started 18 years ago, at 10:52 AM

There are days that arrive and bring with them a profound sense of consternation. For me personally, today was one of those rare days in my life. There are many reasons why today has so much meaning but I want to focus on the single, most important one. On January 18, 2000 at 10:52 AM, Gavin was born into this world. While I wasn't present at that point in time, Gavin wouldn't enter my life for another year or so. Gavin has faced so many obstacles in his young life. Some of these obstacles were familial in nature while others were physical and emotional in nature. This young man has been through more in his short life, than most people would in two lifetimes. As a family, we've been through…

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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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