IVIG Archives - The Autism Dad

The coolest thing happened today

As the title states, the coolest thing happened today. I've been talking about Gavin's ever-growing level of independence, and today marked a big first for him. Gavin gets his IVIG Infusion supplies delivered every month. He organizes them into kits and even does the infusions on his own. I have almost zero involvement in the process anymore. He's doing incredibly well, and I'm proud of him. The only part of this process that he didn't do was sign for the delivery, fill out the paperwork, and mail it back to the hospital. That's always been my job. It's been my job until now, that is. When his delivery arrived yesterday, I asked him if he wanted to do the paperwork. He has to sign his name, date it, and stick…

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January 8, 2022

My thoughts

A few concerns have bubbled to the surface today

Gavin missed his IVIG Infusion yesterday because his supplies never showed up. I called the pharmacy and they are apparently waiting on a new order from his doctor. They expect to have that some time today and then we should get the supplies this week sometime. This always makes me nervous and I know it upsets Gavin because not only does it break his routine but he also misses an infusion. As much as he hates these life saving infusions, he hates missing them even more. He's feeling a little better knowing that he might have his supplies before his next scheduled Infusion on Friday. Mr. Emmett hasn't been feeling well today. He ended up in my room at some point last night because he had a stomach ache. He…

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January 12, 2021

Gavin / My thoughts

Some of Gavin’s labs are coming in and they’re still very concerning

It's been an emotionally exhausting day. I spent most of today trying to keep myself focused on the things I have control over. Unfortunately, there's a great deal that I have no control over and that sucks. I was very consumed with waiting on Gavin's lab results to come back from yesterday's repeat lab work. You can read the back story here. About 10 am this morning, part of the results came back and unfortunately, they haven't improved. I'm still waiting for the results containing his immunoglobulin levels because that's the big one. It stands to reason that we're likely looking at those results very concerning results being verified. As it stands, we are looking at another day before we get those results back and I can't explain just how…

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September 2, 2020

Autism Parenting Advice / Day Trips / Family Fun / My thoughts

It’s a bad day but this is how we’re going to move forward

I'm desperately trying to change the course of our day for the better. The boys want to go back to Quail Hollow and go hiking today. I don't exactly feel up to doing that and I know Lizze is still a bit under the weather. Having said that, it's a very positive activity and it gets them away from their tablets. They may take them with us for the sole purpose of taking pictures, and I'm okay with that. If we do end up going, I think we'll take Ruby with us. She'd have a great time and that's something we couldn't easily do with Maggie. She was way too big to load in the car and people don't always react well to pits. This will help to make a…

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July 9, 2018

Inspirational Posts / My thoughts

How a tiny brown bat helped me teach my kids a valuable life lesson

We had a pretty good day in our little corner of the world. The boys went to a cookout with Lizze's parents, Lizze rested because of a really bad migraine and I hung out with Gavin. This whole thing with Gavin sucks but we're making the best of it. In an effort to make Gavin's situation suck a little less, I put together a pizza and movie night for the family. We watched Ready Player One and had Marcos Pizza. The movie was probably among the best I've ever seen. The kids loved it and can't wait to watch it again. We had a nice quiet evening at home and made the best the situation in which we find ourselves. You always need to try and make the best of…

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July 9, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 2

In Part 2 of Talking with a Schizophrenic, Gavin details his latest mission to save the timeline from his evil self. It's very important to understand that this is not an issue of an overactive imagination. If you missed Part 1, you can find that here. In Gavin's mind, these things are actually happening and they are very real. He does his best to recount his actions but struggles with memory recall. He's very proud of these missions, wants to share them and truly believes he's saved the Universe. We don't feed the delusions but we don't challenge them either. Our job is to listen when he wants to talk because as long as he's comfortable telling us these things, we have a much better understanding of where he is…

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July 8, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

The #1 thing all #Autism Parents worry about and it’s not what you think

Over the last decade, I've put a great deal of focus on the fact that all people touch by Autism are unique and not cookie cutter copies of each other. I also stressed the same applies to Autism families as well because no two are exactly the same. Both of these statements are true and sadly, too many people still don't grasp this concept. Stereotypes and assumptions still abound when it comes to anything Autism related. This post isn't about reiterating the same old facts all over again. Instead, this post is about the number the one worry that all Autism parents share. Aside from loving our kids with Autism unconditionally and without limits, this is one thing that in my experience is absolutely universal. One might assume that we…

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July 8, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

My wife and I have made a very difficult decision

I haven't heard anything about Gavin's IVIG infusion meds yet and he will be missing his sixth infusion in a row on Monday. As a result, Lizze and I are having to make some difficult decisions. It's completely reasonable to assume that with every missed infusion, the risks to Gavin's health increase. We don't know anything for certain or to what degree the risks increases but I think it's perfectly reasonable to take precautions at this point. With that being said, Lizze and I have decided not to expose Gavin to large groups of people. Things like crowed movie theaters, family gatherings and even the grocery store are needless risks. Again, we know for sure is that he has a severely compromised immune system. We know for sure that he…

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July 8, 2018