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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I’m physically and emotionally drained

Today was a really difficult day for many reasons. Some of those reasons are obvious and some I won't be talking about right now. Perhaps someday, I'll have the courage to open up more than I have previously. As for the many things I will talk about, it was rough. The funeral went about as well an any funeral could go. It was sad but handled beautifully. It was heartbreaking but there was celebration at the same time. I picked the boys up from school after the cemetery, while Lizze rode back to the church with her cousin. The boys ended up having a fun with their cousins and we spent a bit more time with family before heading our separate ways. This whole week has taken its toll on…

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