Common Variable Immunodeficiency Archives - Page 155 of 260

This happens every single night, without fail

Every single night, no matter what's going on or how bad of a day I've had, I can always count on Gavin's bedtime routine. ☺ Part of that routine, is asking me if he can show me his city. By that he means he wants me to look at the progress he's made on one of his tablet games that day. I try to always oblige him because showing me his progress in the game is the equivalent of scoring a winning goal for him. He's really proud of himself and it only feels right to let him feel a sense of pride. Truthfully though, I don't know the difference between what his city looked like yesterday vs today. It always looks the same to me but he's happy so…

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August 16, 2018

My thoughts

This has been a huge problem for almost 2 weeks now

I hesitate to say this out loud but I think we finally have our internet problems addressed and it only took about two weeks to do so. 🙄 About two weeks ago, we had to upgrade our internet plan. The bandwidth was insufficient for our needs and it was causing a lot of problems. The upgrade itself wasn't very costly, so it was something we could pull off. Anyway, it ended up taking three or four trips to the Spectrum store to swap out defective modems and routers and if you've ever been to one of Spectrums stores, they are a nightmare. On top of those four trips to the store in order to swap out equipment, we had three or four service calls, countless hours on the phone constantly…

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August 15, 2018

Gavin / My thoughts

I’ll admit it, I’m guilty of this

I'm trying to focus on the positive things we have going on right now. Admittedly, that's not easy to do because the struggles are seriously overwhelming. Gavin in particular, struggles quite a bit and it's both insanely frustrating and utterly heartbreaking, all at the same time. Trying to get Gavin to remember even simple one steps tasks is an uphill battle. It doesn't matter how much I love him, it's really, really frustrating because I have to micromanage his life. Having said that, it's really cool that I noticed this tonight and I wanted to share it with you all because it's a perfect example of when I get so wrapped up in the struggle, I can miss the obvious victories. It's true that Gavin struggles tremendously with his memory.…

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August 15, 2018

Gallery / My thoughts

I’m thankful it happened but I’m heartbroken that it’s necessary

I've been sorta struggling a bit lately but I'm feeling pretty good today. I ran into an old friend from high school and it was awesome catching up. It was one of those things that was unexpectedly random but it changed the course of my day. 😀 Anyway, I wanted to catch you up on a few things that I'm behind on. In my opinion, these are really positive things but at the same time it's heartbreaking that it's a necessity. Maybe you remember that we've been trying to get Gavin into Hematology for the better part of a year. He was referred by his immunologist because of his on again off again neutralphilia. We have no explanation for that or the sudden, random drops in his platelet counts as…

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August 14, 2018

Elliott / Gavin / My thoughts

That would have been a problem

I'm not sure what we were thinking but it turns out that school begins on the 21st and not the 27th. I found that out this morning when I called to double check with the school. Apparently, orientation is on Monday and Tuesday is the first day back. We were totally planning on the 27th and turns out that would have been a problem. 😁 The boys are excited and for the most part, even have the same teachers as last year. That's a relief because switching teachers is always a very stressful thing for my kids. I think that's actually pretty common for kids with Autism. Anyway, we're going to have to figure some things out because we now have less time to prepare. While I will miss the…

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August 13, 2018

Gavin / IVIG Infusion / My thoughts

Unfortunately, I had to teach Gavin a lesson this morning

Unfortunately, Gavin's having to learn a lesson this morning. Every Monday and Friday morning, Gavin needs his IVIG infusion. This is something he'll have to do for the rest of his life. It's not something that gets better and it's only likely to get worse over time. We have a rule that Gavin must do his IVIG infusion first thing in the morning. He's supposed to eat breakfast, take his meds and on Mondays and Fridays, get his infusion going. This morning he ate breakfast, took his meds and went upstairs to play his tablet. When I realized the time, I called him down and questioned him about this. As soon as I pointed out that he had not started his infusion, he immediately reacted by punching himself in the…

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August 13, 2018

Inspirational Posts / My thoughts

I was not a good husband or father today

I've always been different. I never really got into trouble as a kid or teenager. I never drank in high school and to this day, I've never done any form of recreational drugs or even smoked a cigarette. Peer pressure was just something I didn't pay much attention to. Growing up, all I ever wanted to be was a husband and a father. When everyone else was thinking about being a doctor or politician, I was thinking about having a family of my own. Obviously, I needed a career as well but that was more of a means to an end. I had an amazing pair of role models in my parents and while I know they aren't perfect, they always set a good example. My Mom and Dad always…

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August 13, 2018

Gavin / IVIG Infusion / My thoughts

Gavin’s doing better in this area

I know Gavin struggles in most areas of his life. That's just the reality of the situation and I won't sugar coat or spin that. It's frustrating as his parent because I find myself having to micromanage is life and I don't want to be doing that. Having said that, I have a spot of good news. Gavin is doing better with his IVIG infusions. When his infusions started up again, after the medication shortage issues, he couldn't do his infusions on his own anymore. Maybe too much time had passed and he forgot how to do them properly? Truthfully, I don't know. I'm relieved to share that the last few infusions that have been done, he's done entirely on his own again. He's doing a very good job and…

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August 12, 2018