His #IVIG infusion was a disaster this morning and here’s why

Gavin's been having a difficult morning so far. It was IVIG infusion day again (as it is every Monday and Friday), and it did not go well. Lately, Gavin likes Lizze to place the needles in his belly because they don't often leak when she does it. Lizze and I are both concerned that Gavin isn't doing his own infusions anymore. It's imperative that he be able to perform these infusions on his own. Anyway, Lizze was going to help him as soon as she was done eating, but he either misunderstood or wasn't listening cause he went off and did it himself. Unfortunately, both needle placements failed and were leaking. That always pisses him off, and it's understandable. This means he has to be re-stuck, and that means more…

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The dangerously high heat is upon us

We're currently in the path of dangerously hot weather. The heat index is supposed to approach 110°F today and tomorrow. We plan to hunker down and remain grateful we have central air. I was able to hit the grocery store yesterday, and while we do have a doctors appointment in about an hour, we don't have any other plans at this point. Please stay cool. Please stay safe if you're in the path of this excessive heat. Hydration is crucial.

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We are celebrating a pretty awesome victory tonight

I wanted to drop a quick line and update everyone on how Gavin did today. I've been talking recently about how Gavin is struggling with his temper or rather controlling it. He's got a very, very short fuse on a good day and no fuse on most others. He's been getting violent and aggressive when something doesn't go the way he expects it to. The past few days have been very challenging because he's exploded on more than a few occasions, and that creates stress for everyone. Most of Gavin's life was spent bouncing from one violent, self-injurious meltdown to another. All of us have been traumatized by Gavin's behaviors over the years, but he's been doing so much better as he's gotten older. Part of the issue with this…

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Last night sucked but I feel pretty good today

I slept well last night, and while I got off to a late start, I went walking before 9 AM. I wanted to get this done before the dangerously hot weather kicked in. Self-care is so important for a caregiver to focus on, and I want to not only be there for my family, but I also want to be a good example to my readers as well. In other news, it's Lizze's birthday today. She's not feeling well but is in an excellent mood, and that's awesome. ☺ Last night we had her special dinner because she was feeling good and we wanted her to be able to enjoy her birthday dinner. Tonight, it's going to be cake and ice cream. We're still working on the birthday present front…

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His explosive temper is a major problem

We're becoming more and more concerned about Gavin's explosive temper. It doesn't take much to light his very, very short fuse. The end result is loud, aggressive, and violent. He had another blowout at therapy tonight, and it took considerable effort to get him calmed down. We spent some time listening to Gavin, tell us about his missions. It was confusing and difficult to follow. Afterward is when the trouble began. Essentially what happened was that everyone was joking around. Lizze and I were talking with Dr. Pattie, while the kids were playing. There was a disagreement over what they were going to play, and Gavin lost it. Emmett was upset because Gavin didn't want to play monkey in the middle like they have been recent. He made up a…

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One on one time with my kids is always a priority

This morning I was able to convince Emmett to go walking with me. It's really nice to be able to do that because it's quality time, without the distractions of everything going on at home. I like to get as much one on one time with my kids as possible. I think it's really important. Emmett and I went one lap around the track, and he did great. He has so much energy and can be difficult to contain, but it was fun. I was able to show him the new ducks, and he got to visit his old friend, the lonely duck. I know my walk was shorter today but I gained way more than I lost. 😊❤

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I’m hoping Emmett will go with me

We're supposed to get hit with major weather today and then the heat index is supposed to be very dangerous the rest of the week. At the moment, things are pretty comfortable, and I'm going to try sneaking in my morning walk before the weather hits. The boys have therapy again tonight, but that's pretty much the extent of scheduled activity for the day. I'm hoping to get some things done today and be able to check them off my ever-growing list of stuff I need to get done. I might try and get Emmett to walk with me. It'll do him some good and it'll nice to hang out.

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He gets very angry and looks for something to hit

I wanted to briefly talk about therapy tonight because we spent it trying to address some problems we are experiencing with Gavin. We spent time talking with Elliott first, but then an issue arose with Gavin that sorta derailed things. Gavin is an amazing young man, who's come a very long way over the years. Unfortunately, Gavin also has a temper and very little ability to manage it. Roughly 80% of the time that Gavin makes a mistake or needs to be corrected, he loses his temper. This is usually because he can't accept ever making a mistake. When this happens, he gets very, very angry and will look for something to hit. Usually, that something is himself. He punches himself in the face or hits his legs. He also…

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