Read more about the article Parents aren’t supposed to bury their kids
Fragile Health / Gavin / My thoughts

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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July 28, 2017
Read more about the article It looks like Gavin might have his wish granted 
Gavin / My thoughts

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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July 27, 2017
Read more about the article How the IVIG infusion went
Gavin / IVIG Infusion

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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July 25, 2017
Read more about the article I’m very concerned 
Autism Parenting Struggles / Gavin / My thoughts

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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July 22, 2017
Read more about the article It’s the only time I can break down
Gavin / Heartbreak / My thoughts

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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July 20, 2017
Read more about the article So here’s how Gavin’s doing
Bad Reaction / Gavin / IVIG Infusion / My thoughts

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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July 18, 2017
Read more about the article It’s things like this that make communication challenging 
Gavin / My thoughts

It’s things like this that make communication challenging 

Gavin had a weird night last night. Right after dinner, I got Gavin's IVIG infusion going. The weirdness started when he decided to stop eating dinner because he thought he might get reflux if he finished it. He was afraid that if he ended up with reflux, he wouldn't be able to get his infusion tonight and would have to wait until today. I didn't argue with him because whatever... It's not worth it. Gavin's right in the sense that I wouldn't delay his infusion if he were dealing with reflux. The infusion is hard enough on his body and if something happens during or after the infusion, I need to know that he was okay prior to beginning. Does that make sense? Maybe five minutes after getting the infusion…

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July 18, 2017
Read more about the article Heartbreaking signs that he’s getting worse
Gavin / General Update / Heartbreak / My thoughts

Heartbreaking signs that he’s getting worse

Gavin's showing more and more signs of regression. As someone who sees him all day every day, it's harder to pick up on things like this because it's generally a gradual process. When someone sees him for the first time in awhile, it's much easier for them to pick up on the changes. I've been paying closer attention lately because I've been worried that he was experiencing more regression, but wasn't sure. It pains me to say this, but he appears to be regressing once again. Regression is a huge part of Childhood Disintegrative Disorder, and what sets it apart from other, more common forms of Autism. Gavin's losing skills he'd previously mostly mastered. His executive function is very much declining. He's become more unorganized and has a shrinking vocabulary.…

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July 16, 2017