Read more about the article It’s getting harder not to worry
Gavin / My thoughts

It’s getting harder not to worry

I'm not sure what's going on with Gavin lately but he's sleeping a lot more during the day. Our initial thought is that it's medication related because the Clozapine can make him sleepy. What's sorta countering that theory is that Gavin was on 800mg per day for years and years. He was never really sleepy like this, even on that high of a dose. About a year or so ago, his dose was cut in half and he now takes 200mg in the morning and 200mg at night. There was no appreciable difference in sedation when the dose was lowered. Out of nowhere however, he's now having to take two naps a day. It seems odd that this now a problem when nothing has changed in well over a year.…

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June 7, 2018
Read more about the article Things have gotten so much more complicated
Akron Children's Hospital / Cardiology / Gavin / My thoughts

Things have gotten so much more complicated

Before I go into anything, I want to begin by saying that Gavin's echocardiagram looks good. Everything appears to be normal and that's really, really good news. Gavin did really well with the testing and was very cooperative. He even tried to carry on conversations with the staff. It was sorta awkward and unrelated to anything that was happening but I love that he tries. ☺ The cardiologist and his staff were amazing. They took all the time they needed to be thorough and make sure we covered everything. You have to understand something about Gavin. He has an insanely long and incredibly complicated medical history. It's very difficult for anyone to sorta jump in this late in the game and hit the ground running. The title indicates that things…

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June 7, 2018
Read more about the article Returning to Cardiology at @AkronChildrens Hospital today
Akron Children's Hospital / Cardiology / Gavin / My thoughts

Returning to Cardiology at @AkronChildrens Hospital today

Gavin and I will be heading off to Akron Children's Hospital once again today. We were able to get an immediate appointment in cardiology and that's crazy fast. This is a very important follow-up in regards to Gavin possibly having Marfan Syndrome. We've been down this road before but the doctors at Akron were very concerned about how Gavin physically presented and wanted him to have an echocardiogram before we proceed with his scopes. I'm not sure he will get his echo today but we're seeing the cardiologist in order to figure out how to proceed. Gavin's not nervous because he doesn't understand what's going on but he knows there won't be any needles. The echo is noninvasive and he's had a few of them done already. We just need…

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June 6, 2018
Read more about the article The Life-Threatening Reason Gavin’s Surgery was canceled (video)
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery / YouTube Video

The Life-Threatening Reason Gavin’s Surgery was canceled (video)

As you likely already know, Gavin was scheduled for surgery at Akron Children's Hospital yesterday. Everything went as planned but we ran into a problem. I summed everything up in the video below because it was easier to talk about it than try to explain in writing. I'll quickly explain what happened before leaving you to the video for the details. Gavin's surgery was canceled at the very last minute and I mean that literally. He was just about to go into surgery when two issues came up. One was workable but one of them led to everything being canceled. The first issue was legal but more of an ethical concern than a legal one. While this did come up and I share this in the spirit of honesty, it's…

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June 6, 2018
Read more about the article We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures

Gavin's a bit nervous but doing well. He's very focused on the IV heading his way and is trying to talk himself through it. He brought a stuffed animal with him to help him be brave, his words not mine. We're waiting for the doctor and anesthesiologist to come talk to us before they take him back. Gavin of course, has some questions a out the IV he's getting but aside from that, everything has already been answered that can be answered. We'll likely be here for a few more hours at the very least. As far as I know, Gavin won't be able to really eat anything substantial until later in this evening. Maybe I've misunderstood but either way, Gavin's done remarkably well with not eating. We're super proud…

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June 5, 2018
Read more about the article Please keep Gavin in your thoughts and prayers this morning
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery / Thoughts and Prayers

Please keep Gavin in your thoughts and prayers this morning

Gavin has now gone more than 24 hours without eating. For someone who loves their life around eat meal of the day, that wasn't easy and it's still going to be almost half a day before he's able to eat. We will arrive at Akron Children's Hospital in about 2 hours, and his scopes are planned for noon. It's going to be a long morning and afternoon. As of right now, Gavin's in good spirits and we have hope that he will be just fine. We know he'll be physically okay but emotionally, he's going to likely struggle, at least in the short term. For now though, he's relaxing and playing his tablet. Please keep Gavin in your thoughts and prayers this morning. I know that I will definitely appreciate…

3 Comments
June 5, 2018
Read more about the article #Autism further complicates an already unpleasant situation
Akron Children's Hospital / Autism Parenting Struggles / Featured / Gastroenterology / Gavin / My thoughts / Surgery / Vivint Gives Back

#Autism further complicates an already unpleasant situation

This is going to be a fricking nightmare. It already is. Gavin has begun the pre-op cleanse if you will. If that wasn't bad enough, he's not allowed to eat anything for at least the next 28 hours. For most people, a 28 hour fast would be very difficult. Gavin however, isn't most people. His life revolves around two things, his tablet and food. Food is such a huge thing for him and he becomes very unpleasant to be around when any of his meals are perceived to be late. To say that Gavin is food motivated would be an enormous understatement. He already ate breakfast before we could get to him this morning but the hospital said it was okay, as long as he eats nothing else. To make…

4 Comments
June 4, 2018