Read more about the article Wish us luck
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Radiology

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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May 29, 2018
Read more about the article We have to be at @AkronChildrens Hospital this morning for more testing
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts

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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May 29, 2018
Read more about the article I’m worried Gavin’s becoming paronoid
Gavin / My thoughts / Schizophrenia

I’m worried Gavin’s becoming paronoid

Something Gavin brought up during his visit with Dr. Moodley in Pediatric Neurology, had nothing to do with why he was there. Dr. Moodley was trying to involve Gavin in as much of his health care as was possible. Clearly it's not possible but I like that he tried anyway. When asked if there was anything bothering him, meaning anything Dr. Moodley deals with, not just anything, Gavin replied with an answer that has me worried. One of the things that we have to be very careful with in regards to Gavin being Schizophrenic, is watching for signs of paronoia. The only step beyond Schizophrenia is Paronoid Schizophrenia. That's not a good step at all for those keeping track. Gavin's never really shown signs of paronoia, at least consistently enough…

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May 24, 2018
Read more about the article Here’s what happened at the @ClevelandClinic yesterday
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

Here’s what happened at the @ClevelandClinic yesterday

We had to make our way to the Cleveland Clinic yesterday for a Pediatric Neurology appointment. Gavin had a follow-up in regards to epilepsy and autonomic dysfunction. I already shared the results of his Orthostatic testing but you can find those here. Overall, his appointment went really well. We talked about our concerns in regards to his endoscopy and colonoscopy. Dr. Moodley doesn't have any overt concerns in regards Gavin being sedated. As long as his vitals are closely monitored and he has an IV established, there isn't too much to worry about. If Gavin wasn't as physically stable as he's been, than it might be a different story but it's been years since he's had a major crisis. As for his EEG, it was mostly normal as well. There…

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May 23, 2018
Read more about the article Gavin’s orthostatic testing results from our @ClevelandClinic trip
Cleveland Clinic / Gavin / My thoughts / Orthostatic Testing / Pediatric Neurology

Gavin’s orthostatic testing results from our @ClevelandClinic trip

I have a much larger update planned but for the moment, I wanted to let you know how Gavin's orthostatic testing went at the Cleveland Clinic yesterday. Whenever Gavin see his neurologist at the Cleveland Clinic, they have to do orthostatic testing because he has autonomic dysfunction.. Orthostatic testing is simply taking his vitals but doing so while he's physically in different positions. The point is to see how his body physically responds to changing positions. In a normal, healthy person, there shouldn't be much difference between vitals taken while lying down and standing up. Orthostatic Testing Results: Lying Down 114/68 HR 99 Standing Up 118/77 HR 121 These results are considered to be mostly normal and that's a very good thing.. ☺

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May 23, 2018
Read more about the article We’re returning to Pediatric Neurology at the @ClevelandClinic today
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

We’re returning to Pediatric Neurology at the @ClevelandClinic today

Gavin has an epilepsy follow-up in Pediatric Neurology at the Cleveland Clinic this afternoon. We'll be leaving shortly and I'm hoping that everything goes well. Today's appointment serves as both a follow-up and a consultation. Gavin is supposed to have an endoscopy and colonoscopy on June 5th. We're worried about how his autonomic dysfunction may increase the risks associated with going under. We also are concerned about the vagal response from shoving the camera down his throat. Hopefully, his specialist at the Cleveland Clinic will be able to address these concerns and diswade some of our fears. I only want good news today because I'm struggling a bit on a personal level this afternoon and I don't think I can take any more bad news in regards to Gavin.

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May 22, 2018
Read more about the article Why his lack of awareness creates problems
Autism Parenting Struggles / Gavin / My thoughts

Why his lack of awareness creates problems

Gavin is struggling a bit more than usual today. He's never really been acutely aware of what's going on around him but he's absolutely oblivious right now. I don't know that there's anything going on today that's really out of the ordinary. There's nothing external to Gavin that seems to be causing him any distress or anything like that. It's important to understand that Gavin's not even aware that he's doing anything problematic because he's not doing any of this on purpose. He's just being himself and going right along with his day. The problem that his lack of awareness means we have to be ever vigilant. I was boiling water on the stove this afternoon and had to make sure that Gavin didn't touch or bump into the pot…

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May 21, 2018