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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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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We had massive, massive meltdown

Gavin's had a rough day today. He was very easily frustrated and couldn't seem to remember much of what he was being told. A good portion of this was Gavin being Gavin and is fairly typical of his general demeanor. Some of it was a bit excessive and not something we see very often from him. For the most part, Gavin has mellowed out significantly as he's gotten older. That doesn't mean we don't have problems. Tonight, our internet went out again. Spectrum has to come back out in the morning because they need to replace the modem with a different model. Too many people are having issues and it looks like they are replacing them with a different model. It's free so I don't really care what it is,…

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I was so frustrated I could scream (this is a very sensitive topic)

It's been an insanely frustrating day. Very little went as planned. Some went okay and a small amount has been an absolute disaster. The internet was a nightmare because two rounds of brand new equipment was faulty. I now have to wait until Wednesday to get a tech out here to look over the equipment that still isn't working. I love Spectrum's approach to broadband but I very much dislike the company. The appointments themselves went alright for the most part. Turns out Gavin did have an appointment as well. Not a huge deal since all of us were there already. That being said, Gavin is my main source of aggravation today. I know it's not his fault but goddammit, he can be frustrating. I've been trying to think of…

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I’m a little worried about Gavin this morning

Gavin has been incognito all morning and we aren't sure why. The only time we've seen him today was at lunch. He seemed sorta slower and more out of it than normal. Something else we noticed right away is that Gavin was wearing shorts. What does wearing shorts matter, you may ask? Well simply put, Gavin never and I mean never wears shorts. I can't even remember the last time I saw him in shorts. Okay, he wore a bathing suit at his grandparents last night while the boys played in the sprinkler. It's so unusual for Gavin to wear shorts that the very first time he experienced the ocean, he wore jeans. Anyway, Gavin says he's okay but I think we're going to want to keep a closer eye…

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Gavin is so gullible and that scares me

I've talked about this before but it's been many years since I've brought this up. Gavin is incredibly gullible and as a parent, that scares the crap out of me. I was reminded of this today. We went to a Harry Potter thing at our local library yesterday. I didn't particularly enjoy it but Lizze and the boys did. I always say that it's not so much what I'm doing but who I'm doing it with. I love spending time with my family and this was a chance to do just that. ☺ 💙 When the kids walked in, they were lined up and the sorting hat put them in their houses, just like in the books/movies. This was an actual hat that actually sorta moved around and would speak…

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Gavin forgot something and it’s worrisome

Gavin had his Friday IVIG infusion this morning. Thankfully, the process went on without any hiccups and he actually did a much better job of putting things together. There has been some concern because he hasn't been able to properly set things up and perform his own infusions lately. Doing a better job today has been a very positive thing and hopefully, that bodes well for the future. We'll have to keep working on this going forward and with any luck, we can continue to build upon today's success. Unfortunately, that's where the good news ends and the worrisome news begins. If you're a seasoned reader, you know that we went through a month of hell recently because Gavin's infusions medication (GAMMAGARD) went into a nationwide shortage and it became impossible…

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Until the day I die

I'm lucky I have no hair because if I did, I'd have ripped it out this morning. Gavin's already struggling and that struggle is pushing me closer and closer to the edge. I'm trying so hard to do right by everyone in my family but I think that task might just be bigger than me. Last night, Gavin came to us about midnight, complaining of his chin being ichy. He's was clearly distressed but not wanting to tell us what was wrong. After a painfully awkward, completely unnecessary back and forth, he admitted that his beard is what's causing the itchiness. For some reason, he was embarrassed to say that his beard was a problem. I told him to shave and slap some lotion on his chin. That should help…

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