#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…

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It’s a bittersweet blessing

I went back and forth a few times with multiple people from Akron Children's Hospital this morning, trying to figure out the missing lab work thing. I'm happy and relieved to say that I think we're good now. ☺ We have the pre-op prep instructions that he will begin on Monday and while unpleasant, it should be okay. Lizze and I have both twisted ourselves up over this set of procedures that Gavin will have done on Monday. While a colonoscopy and endoscopy aren't catastrophic in nature, it's not something many 18 year olds have done. I'll be 40 in August and I've never had one done. We never want to put any of our kids through anything that's unnecessary, especially if it's more invasive. The reality is, Gavin can't…

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Pre-testing at @AkronChildrens Hospital went better than expected

It's been a really long and emotional day. I wanted to quickly let you know how testing went this morning at Akron Children's Hospital. This was all in regards to the medically necessary procedures Gavin needs to have done on the 5th of June. We had been concerned about how he would react to learning what was going to be taking place. Gavin was never going to refuse anything but we were concerned that he would be freaked out after learning about what a colonoscopy and endoscopy are all about. There was never going to be a challenge gaining Gavin's cooperation because that's just how Gavin works. We were simply worried that he would panic and be freaked out for the next 5 days until he was scheduled for surgery.…

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We’ve arrived at @AkronChildrens Hospital for pre-testing

It's not even 7AM and we're sitting in the lobby of the surgery wing on the 4th floor of Akron Children's Hospital. This is an appointment that we're a bit nervous about because we aren't sure how Gavin's going to react. The whole point is to go over the details of his upcoming scopes, make sure we understand everything and discuss any concerns. It should be pretty simple. We go over everything in great detail, have a basic health screening and gain a better understanding of what to expect on June 5th. We're a bit nervous because Gavin tends to frighten easily and let's face it, who actually likes the idea of getting an endoscopy or colonoscopy? We also aren't sure how this will go as Gavin is 18 years…

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Gavin’s had an Upper GI at @AkronChildrens Hospital this morning

Gavin's appointment went really well. I mean, we don't know the results but Gavin physically did pretty good. He could follow directions and it took a little bit because they had to make more stuff for him to drink. I can't say enough positive things about how nice everyone was. They were very patient and not that I need to explain to anyone because it's painfully obvious, but they recognized his cognitive impairments and handled him very well. We don't know the results but we'll get them at his next follow-up. If there's a major issue, they'll call us first.. Thank you Akron Children's Hospital, you've never let us down and always treated us with respect. [foogallery id="80856"]

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Wish us luck

We're getting ready to leave for Akron Children's Hospital after a night of little sleep. Lizze and I have both been dealing with insomnia recently and it's making life even harder than it already is. I'm not sure what's causing our sleep disturbances but I bet you a shiny buffalo nickle that it has to do with stress. We are both extended about as far as we physically and emotionally can be. In fact, we're significantly over extended. Lizze can fall asleep but won't stay asleep and I can't fall asleep but will stay asleep, if that makes any sense. Anyway, we're both exhausted and exceptionally grateful that her parents volunteered to keep Elliott and Emmett overnight so we can get Gavin's testing done without having to worry about the…

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We have to be at @AkronChildrens Hospital this morning for more testing

One of the things I mentioned that had come to light during Gavin's visit to the Gastroenterologist last month was that Gavin is having a hard time swallowing. Why we were only just hearing about that is just one of the many frustrating things about trying to manage Gavin's health. He simply didn't think it was worth telling us about. WTF?? This kid tells me every bizarre thought that pops into his head and it drives me fricking crazy but when it's something this important, he says nothing. Aghhhh Anyway, in a few hours, we will be heading to Akron Children's Hospital because Gavin is having a swallow study done. This is where he'll be drinking a liquid laced with something that makes it show up on x-ray and they…

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@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…

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