Read more about the article We’ve arrived at our 3rd and final doctors appointment for the day
Gavin / My thoughts

We’ve arrived at our 3rd and final doctors appointment for the day

Gavin and I just got home in time to make it to his 3rd and final appointment of the day. We're meeting with his therapist to talk about some of the things Gavin's struggling with and brainstorming some ideas in regards to helping him work through them. The main thing we're focusing on is his negative, internal dialog and his inability to cope with imperfections. We'll have to see what happens and go from there. I'll be updating you about Gavin's appointment with Cardiology at the Cleveland Clinic in a little while. I need to catch my breath first. ☺

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November 7, 2018
Read more about the article We’re waiting to see the doctor and Gavin’s getting hangry
Cardiology / Cleveland Clinic / Gavin / My thoughts

We’re waiting to see the doctor and Gavin’s getting hangry

Gavin's EKG went well and literally lasted only a couple of minutes. We made it to his second appointment of the afternoon and just spent a good bit of time, meeting with the nurse, going over a detailed family history. She was great and I really appreciate that. ☺ Now we're waiting for the doctor and I must say that it feels like it's about 1,000 °F in this room. I hate being up here by myself but it is what it is. Hopefully it won't be too long of a wait because Gavin is getting hangry..

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November 7, 2018
Read more about the article We’ve just arrived at the @clevelandclinic for Gavin’s #EKG
Cardiology / Cleveland Clinic / Gavin / My thoughts

We’ve just arrived at the @clevelandclinic for Gavin’s #EKG

Gavin and I arrived at the Cleveland Clinic, right in time. Our first stop is his EKG and then we see his new cardiologist immediately afterwards. Lizze wasn't feel well this morning and therefore stayed home. At the moment, we're crammed into a tiny waiting room. I don't care about the size of the room but some one in here is a very heavy smoker and they smell like an ashtray. I don't do well with this particular smell. It's making me sick. 🤮 It's a good thing Lizze isn't here because this smell would kill her. Anyway, now we just wait to be called back.

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November 7, 2018
Read more about the article Today’s been a mixed bag thus far
My thoughts

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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November 6, 2018
Read more about the article How the kids having a rough morning can be viewed in a positive light by #Autism parents
Autism Parenting Insight / Inspirational Posts / My thoughts

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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November 6, 2018
Read more about the article We got some insanely good news
Akron Children's Hospital / Common Variable Immunodeficiency / Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

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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November 6, 2018
Read more about the article I try so hard not to get angry but his behaviors can make that more difficult
Autism Parenting Confessions / Autism Parenting Struggles / Gavin / My thoughts

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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November 5, 2018