Today’s been a mixed bag thus far

I was able to get out and go walking this afternoon. I got off to a later start. Lizze needed to talk because she's struggling with the loss of her grandmother. I imagine many of us can understand what that feels like. 😔 The boys had a good day at school. Elliott was so distracted this morning that he put his pants on over top of his shorts he wore to bed. Rather than ask to use the restroom and take his shorts off, he instead chose to roll his pant legs up to his knees because he was too warm. Sometimes I wonder what goes through his head.. 😂 As for Gavin, I haven't seen too much of him today. He's been in his room, doing God only knows…

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How the kids having a rough morning can be viewed in a positive light by #Autism parents

The boys got off to school with relative ease. It's important to understand the relative ease part means that all things considered, it could have been worse. Frankly, any morning we can walk away from in one piece is victory. I wanted to take a minute and help provide some insight into the above paragraph because it can help you better understand some of the challenges facing Autism families like mine. I was expecting a bit of resistance this morning because we had a rough night. Lizze and I took the kids clothes shopping at Kohl's after dinner last night. Gavin desperately needed pants and we had been trying to hold off as long as we could because we're working very hard to help him gain weight. Money is tight…

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We got some insanely good news

I wanted to drop you a quick line to share a bit of insanely good news. Let's be honest, it's been a little while since I've had some really good news to share. Well, you can reset that counter because I have some good news to share. ☺ Yesterday morning or early afternoon, I got a call from Akron Children's Home Health. They were able to secure a month's worth of Gavin's IVIG Infusion medication. It's a bit different this month though. Rather than using two vials for his infusion, he'll need to use three. It's the same medication but in a different concentration. It's not a huge deal and an easy trade-off. Not only did they secure the medication, they even got it delivered the same day. Gavin was…

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I try so hard not to get angry but his behaviors can make that more difficult

I'm not having the best day. My anxiety is through the roof and I'm internally freaking out. I don't really have a specific reason why but it's making me more easily frustrated and/or overwhelmed. Unfortunately, that weakness is making some things harder for me to cope with right now, especially in regards to Gavin's behaviors. He's asking the same question, over and over. This is just one example of this. Since I told him on Friday that his infusion meds were on backorder, he keeps asking me where they are. Every time I tell him that they are on backorder, he's says oh, okay. Ten minutes later, he's asks me the same question again. It's insanely frustrating but I honestly don't think he remember ever asking the question before. I…

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I’m paying the price

I'm not moving a whole lot this morning. Yesterday did me in and my back is done and will be for the next couple of days. There's a reason I no longer do manual labor and it's called an L5/S1 left sided herniation. I'm debating as to whether or not to call my PCP and ask for a Medrol dose pack. It's a 5 day prednisone cycle and it's the only thing that can reduce the inflammation, aside from time. I haven't done this is a few years but I may cave in and make the call.

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This was a massive undertaking and I’m so thankful for the help

I'm completely exhausted and going to bed a couple hours early. Before I do that, I wanted to share some pictures from today's storm damage clean up and say thank you for the help we received today. First of all, thank you to everyone who showed up today to help with what turned out to be a monumental undertaking. Everyone who has seen the tree in person was shocked because the photos simply don't do it justice. The boys and I began cleanup around 11 am and my Dad, sister, a family friend, as well as my aunt and uncle came over to help. We finally finished up around 5:30 pm and everyone was completely exhausted. The kids were a big help. There were a few hiccups but they did…

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Gavin begins Cardiology journey at the @clevelandclinic this week

The Cleveland Clinic called on Friday, before Lizze and I left for the funeral. They were calling to make Gavin's Cardiology appointment. The last time Gavin was at his Neurologist, we discussed Gavin having Ehlers-Danlos. His doctor wants him to be seen in Cardiology at the Cleveland Clinic because of the risk that he may have the vascular form of Ed. Ehulers-Danlos can complicate many aspects of his health. We decided to pull everything up to Cleveland from Akron because Gavin is aging out and will eventually have to move anyway. On Wednesday, Gavin will have an EKG or Electrocardiogram, to sorta measure how his heart is doing. We'll immediately see the doctor afterwards. I'm not expecting anything new to be discovered here because he's seen Cardiology several times at…

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We’re finally going to address a major problem tomorrow

About noon tomorrow, we're going to be picking up a chainsaw and getting the tree in our yard cut up. This has been a frustrating process because we don't have enough of a payout to take care of everything that needs to be done and we've had so many distractions. My Dad and I are going to get this part done, so State Farm can come back out and evaluate the damage to the house without the tree being in the way.. At the end of the day, the bottom line is that we will fall well short of the funds needed to get everything done. As a result, we're going to focus on the absolute most crucial repairs and that will be the damage to the side of the…

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