Is it real or is it drama? 

Gavin's been having a rough couple of days, especially at night. In many ways, he's his own worst enemy. He gets himself all worked up and then he can't settle down.  Friday night we had the medication ordeal. In all the rush to get to calling hours, I want thinking and forgot to physically put his meds in his backpack. When it came to bedtime, he worked himself into a tizzy because he convinced himself that he would never fall asleep until he had his meds.  Missing his meds is not a good thing, however, one dose wouldn't be the end of the world. He would simply pick back up in the morning when he got home.  Lizze's Mom ended up bringing him home around 10 pm (if I recall…

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Don’t tread on his routine 

Shortly after we arrived home last night from calling hours, we realized that we had missed Lizze's Mom trying to get ahold of us. Our phone were still on silent from the service,  It was about 10 pm when we connected and there was an issue with Gavin. In all the chaos yesterday morning, we forgot to put his meds in his overnight bag. On a scale of one to ten, this is maybe a four or five. One night isn't going to be a huge deal, although this almost never happens unless there's an issue with a refill.  Gavin was apparently upset because he was unable to sleep without his meds. The reality is, he's unable to sleep because his routine was disrupted.  Poor Gavin gets himself all worked…

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Parents aren’t supposed to bury their kids

I don't do well with funerals, not that anyone really does. I absolutely avoid going to them because I've seen so much death in my life already.  I can't even tell you how much death I witnessed as a paramedic. Eventually, it gets to you and changes you at your core, at least that's how it worked for me.  Thinking about everything the last day or so, I realized one of the biggest reasons I don't deal funerals very well.  In all likelihood, I will one day attend Gavin's. With all he's dealing with healthwise, his prognosis isn't good. Every time I see a funeral, it feels like a kick in the gut, and reminds me how fragile life is, especially Gavin's.  Maybe that sounds strange to some of you,…

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It looks like Gavin might have his wish granted 

I've mentioned recently that we applied to Make A Wish for Gavin. It's been awhile, we haven't heard anything back, and because he's getting close to the age cutoff, we connected with a local organization.  This is an organization that grants wishes for kids with life threatening conditions.  Lizze stumbled across them in a magazine and sent them an email. We heard back within a couple of hours and a rather lengthy phone interview took place. I'm not going to mention the name of the organization just yet, but when we hear back, I'll share everything.  Over the phone, we designed a wish for Gavin that is pretty amazing. It will involve a 1 week trip to Orlando. We will be staying in a two bedroom condo, and receive tickets…

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How the IVIG infusion went

Gavin's infusion went pretty well yesterday. For some reason, the while process went really fast, and was completed in about an hour. That was really good timing.  Thankfully, Gavin didn't appear to suffer any negative side effect and that's something we're always grateful for. ☺ 

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I’m very concerned 

As Gavin begins to struggle more and more with life, I find myself in a position once again, where I'm unsure of what to do.  Yesterday was a bit rough for Gavin. I had to make changes to the way he was doing things and he didn't take it well. Lizze and I never nitpick any of our kids, especially when it comes to Gavin.  While we don't nitpick, there are times we have to correct him. These kinds of corrections are usually the result of safety concerns. Sometimes these corrections are an attempt to avoid him breaking something, or accidentally hurting someone, himself included. Gavin would never do either of those things on purpose.  What I'm finding is that Gavin is less able to deal with these or any…

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It’s the only time I can break down

Gavin is getting more and more frustrated with himself over his disappearing abilities. I don't really know how else to describe it. He hasn't necessarily forgotten that he should know how to do things, but he's forgotten how to do them.  I can't even begin to imagine what that's like for him.  While I'm overweight, my cholesterol is borderline, and I wage war with Depression, I'm otherwise blessed with good health.  Gavin is experiencing things that would be more common for someone seventy years his senior. He forgets almost everything (short term memory) and easily loses track of what he's doing. When it comes to the games he plays, he can focus, but getting him to draw a picture ends up being too much for him.  We return to his…

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So here’s how Gavin’s doing

Gavin seems to be feeling okay today. That's obviously good news, because he had a rough night, as I said earlier. He's currently sleeping, but that's likely just his morning meds.  We're taking it easy this afternoon but plan on walking as the sun becomes a little more skin friendly.  Hopefully, Gavin will wake up still feeling okay, and will be up to going to the park. I don't like to push him too hard, because his body is inherently unstable. He's been doing pretty good for the last couple of years, but it only takes one time. 

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