Read more about the article Gavin’s health isn’t doing so well
Akron Children's Hospital / Cleveland Clinic / Gavin / My thoughts

Gavin’s health isn’t doing so well

I've had a very busy afternoon of scheduling doctors appointments for Gavin. I bounced back and forth between Akron Children's Hospital and The Cleveland Clinic for what seemed like an eternity. After all the calls, I only ended up with one appointment so far. On September 4th, Gavin will return to his neurology specialist at The Cleveland Clinic. Normally Gavin goes there for his autonomic disorder and epilepsy but this time around is different. Gavin has been telling us that his legs aren't working right. We haven't been able to get more reliable information out of him but it sounds like his legs are giving out. We haven't seen him fall but it seems like he's having issues with his legs supporting his weight. That's a problem. We don't know…

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August 27, 2018
Read more about the article It’s been a rough morning for Gavin but he totally surprised me
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

It’s been a rough morning for Gavin but he totally surprised me

It's been a rough morning for Gavin. I didn't see too much of him until after I got home from taking the boys to school and getting my morning walk done on the way home. When I arrived home, Lizze was watching him get his IVIG infusion ready. I could see from the moment I walked in that he was not in a good place. Sure he was pleasant and polite as always but I could see he was struggling to stay on the road. He got his infusion going and returned to his bedroom sanctuary to wait the process out. Before long, he was back downstairs because one of the infusion sites was leaking a tiny bit. Gavin has historically not done well with problems arising during one of…

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August 27, 2018
Read more about the article So this is what it’s come to
Autism Parenting Woes / Gavin / My thoughts

So this is what it’s come to

There comes a point in everyones life where you to take pause and ask yourself a very important question. How the fuck did we get here? I had one such moment this morning. As I was eating breakfast, Gavin comes into the room and begins talking about his poop. He has absolutely no sense of this is horribly inappropriate to talk about while someone is eating. We need him to tell us if there's a problem, so we told him to tell us everything and we'll decide if it's important or not. Gavin took that literally and we went from struggling to get any information from him to struggling to help him understand that there's a time amd a place. I'm half listening to him and half trying to block…

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August 23, 2018
Read more about the article Gavin did an amazing job this morning
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin did an amazing job this morning

Gavin did a really good job this morning in regards to his IVIG infusion. He got up early and put it together, woke me up in order to check it and then completed the procedure without any help. For me personally, that's a great way to start the week because so often he struggles with these anymore and a bad infusion sets a tone for the week. Great job Gavin.. Keep up the hard work and keep moving forward.

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August 20, 2018
Read more about the article This happens every single night, without fail
Autism Parenting Insight / Gavin / My thoughts

This happens every single night, without fail

Every single night, no matter what's going on or how bad of a day I've had, I can always count on Gavin's bedtime routine. ☺ Part of that routine, is asking me if he can show me his city. By that he means he wants me to look at the progress he's made on one of his tablet games that day. I try to always oblige him because showing me his progress in the game is the equivalent of scoring a winning goal for him. He's really proud of himself and it only feels right to let him feel a sense of pride. Truthfully though, I don't know the difference between what his city looked like yesterday vs today. It always looks the same to me but he's happy so…

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August 16, 2018
Read more about the article I’ll admit it, I’m guilty of this
Gavin / My thoughts

I’ll admit it, I’m guilty of this

I'm trying to focus on the positive things we have going on right now. Admittedly, that's not easy to do because the struggles are seriously overwhelming. Gavin in particular, struggles quite a bit and it's both insanely frustrating and utterly heartbreaking, all at the same time. Trying to get Gavin to remember even simple one steps tasks is an uphill battle. It doesn't matter how much I love him, it's really, really frustrating because I have to micromanage his life. Having said that, it's really cool that I noticed this tonight and I wanted to share it with you all because it's a perfect example of when I get so wrapped up in the struggle, I can miss the obvious victories. It's true that Gavin struggles tremendously with his memory.…

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August 15, 2018
Read more about the article That would have been a problem
Elliott / Gavin / My thoughts

That would have been a problem

I'm not sure what we were thinking but it turns out that school begins on the 21st and not the 27th. I found that out this morning when I called to double check with the school. Apparently, orientation is on Monday and Tuesday is the first day back. We were totally planning on the 27th and turns out that would have been a problem. 😁 The boys are excited and for the most part, even have the same teachers as last year. That's a relief because switching teachers is always a very stressful thing for my kids. I think that's actually pretty common for kids with Autism. Anyway, we're going to have to figure some things out because we now have less time to prepare. While I will miss the…

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August 13, 2018