Read more about the article Why he’s so excited about this red box
Gavin / My thoughts

Why he’s so excited about this red box

It's a little odd but Gavin has been chomping at the bit to get a new sharps container for the disposal of his IVIG infusion supplies. I say it's odd because he's been really focused on it. On Friday, I made arrangements for a new sharps container to be delivered today and the old one picked up. It's not that I was putting this off, it's that the current container simply wasn't full. Gavin perceives it as an eminent issue because it was approaching the full mark, even though there was a good ways to go still. I informed him over the weekend that his new one will be delivered sometime on Monday but I didn't have a specific time frame. That has clearly been causing him a bit of…

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April 23, 2018
Read more about the article It’s getting harder to cope
Gavin / My thoughts

It’s getting harder to cope

I'm having a harder time coping with Gavin lately. God forgive me but he's driving me fucking crazy and I simply don't have the patience he deserves to receive from me. It's important to understand that Gavin's isn't necessarily doing anything wrong. He's just being Gavin. The emotions I'm experiencing in regards to coping is probably two fold. It's part frustration because Gavin's functioning at maybe fifty percent of what he was, say two years ago. The other part is pure, unadulterated heartache because he's only functioning at maybe fifty percent of where he was two years ago. The frustration and heartache are very real. They are very, very impactful emotions, that are at odds with each other. I find myself frustrated by his behaviors and exhausted by how difficult…

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March 26, 2018
Read more about the article Gavin’s IVIG infusion is NOT going well
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / Vivint Gives Back

Gavin’s IVIG infusion is NOT going well

Gavin's IVIG infusion is not going well this morning. For some reason, we can't get any flow and I'm having to force the solution through the tubing manually. It works but it's very difficult and quite painful for a Gavin. I don't know what's wrong for sure, but it could be scar tissue. All I can do is continue to force it through or re-stick the needles in his belly. Gavin wants to avoid being re-stuck and I don't blame him. Hopefully, this will finish up sometime this afternoon and he will be okay. I'm just going to keep an eye on him through the Ping camera from Vivint Home. I've found so many uses for this system but the best have involved using the cameras to monitor my kids…

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February 26, 2018
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 1 big problem we had with Gavin’s IVIG infusion today
1 big problem we had with Gavin’s IVIG infusion today
Gavin / IVIG Infusion / My thoughts

1 big problem we had with Gavin’s IVIG infusion today

I mentioned in an earlier post that Gavin has some problems with his IVIG infusion this morning. It was actually more of a problem during his infusion and not really with the infusion itself.  Normally, he sits in the same place on the same couch and plays the same game on the Xbox or his tablet, to help pass the time.   Today however, his bladder issues hit him really hard. He was unable to sit down without having to get up and race to the bathroom.  It got so bad that we had him stay in his bedroom for the duration because his room is right across from the bathroom and he wouldn't have to keep taking the steps.  That threw him off because he's very particular about the…

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January 23, 2017