Common Variable Immunodeficiency

Category: Common Variable Immunodeficiency

#Autism parenting is all about progress not perfection

It’s not a huge surprise that Gavin’s appointment with his immunologist went well. These appointments rarely go poorly because he’s monitored so closely on a weekly basis. Gavin sees his immunologist because he has Common Variable Immunodeficiency or CVID, which put simply, means he lives with a severely compromised immune system. This is a life …

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We’ve made it to immunology

Gavin and I made it to his appointment. We actually arrived thirty minutes early because there was absolutely zero traffic issues. That almost never happens. Usually, we leave early enough to allow ninety minutes for travel time. Today it only took about an hour because there was simply no stop and go traffic. Who’d of …

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Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn’t wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn’t going well. It’s been about an hour, and I just got …

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Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn’t arrive until late and then he ended up in the hospital. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn’t want …

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It’s terrifying when your child with #CVID can’t get his lifesaving medication

It’s not like receiving a donated liver or kidney, where his body could reject it. That said, Gavin’s body can struggle to accept the antibodies. He can run a high fever, have seizures, experience anaphylactic shock or an autonomic crises can be triggered.

3 hours of driving for a 20 minute appointment

It all depends on traffic and how much God is looking to test my sanity.

We got some insanely good news

I wanted to drop you a quick line to share a bit of insanely good news. Let’s be honest, it’s been a little while since I’ve had some really good news to share. Well, you can reset that counter because I have some good news to share. ☺ Yesterday morning or early afternoon, I got …

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Like we didn’t already have enough on our plate

I received really bad news as Lizze and I were leaving her grandmother’s funeral, on our way to the cemetery yesterday.