Read more about the article My wife suffers from severe chronic pain but we have new hope
Cleveland Clinic / Lizze / My thoughts

My wife suffers from severe chronic pain but we have new hope

I don't write much about Lizze, but not because there isn't anything to say or I don't want to talk about her. She has her own blog where she likes to share her own story and I totally respect that. Sometimes however, it's important to say something anyway because she plays an invaluable role in our daily lives and does so while facing significant challenges of her own. For those that aren't aware or maybe need a reminder, Lizze lives with severe chronic pain. She's lived this way for countless years now and it absolutely takes a toll on her. She's struggled with migraines for most of her life and was officially diagnosed with Fibromyalgia, after extensive testing back in 2005. She recently described her pain by saying that every…

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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 This is what we learned at The Cole Eye Institute today
Cleveland Clinic / Gallery / Gavin / My thoughts / The Cole Eye Institute / Vision Problems

This is what we learned at The Cole Eye Institute today

It's been an exhausting day full of walking, waiting and driving. Gavin's final appointment of the day was at The Cole Eye Institute this afternoon. The appointment went well but it took forever. I honestly felt like we had been forgotten. The good news is that Gavin's eye checked out and they are basically perfect. The bad news is that we still don't know for sure why he's having visual blackouts. The current theory is that these blackouts are caused by migraines. Everything else has been looked at and aside from the pending EEG results, we've eliminated every other possibility. Until we find anything else, we're going with migraines for now. Appointments like these are maddening because all we want are answers and all we end up getting are more…

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January 3, 2018
Read more about the article His EEG is done and Gavin is in good spirits
Adult Epilepsy Center / Cleveland Clinic / Epilepsy / Gallery / Gavin / My thoughts

His EEG is done and Gavin is in good spirits

Gavin's appointment with the Adult Epilepsy Central at the Cleveland Clinic went as well as could be expected. His EEG went fine physically but we won't have any results back until later this week. They did seem to take note of abnormalities but there was nothing I could pick up on for sure. If this has been an EKG, I'd be all over it but I can't read EEG's. Gavin was really cooperative and made lots of awkward attempts to engage the techs in conversation. 😁 I think they really enjoyed working with him because Gavin was so polite and courteous the entire time. EEG's are not comfortable, especially for someone on the Autism Spectrum, dealing with several Sensory Processing Disorder. I was told to call back if I haven't…

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January 2, 2018
Read more about the article We made it to the Adult #Epilepsy Center at the @ClevelandClinic
Adult Epilepsy Center / Cleveland Clinic / My thoughts

We made it to the Adult #Epilepsy Center at the @ClevelandClinic

We finally made it to the Adult Epilepsy Center at the Cleveland Clinic. Traffic sucked and the weather got worse the farther north we went. Gavin didn't have any problems on the way up, he just chilled in the back seat listening to music the whole way up. Not only did we make it but we made it a few minutes early. ☺ Gavin's feeling okay and that will make today that much easier. We have a lot of walking to do and if he wasn't doing well, the walk would be too much for him. We are currently waiting to go back for his EEG. Praying everything goes smoothly.

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January 2, 2018
Read more about the article Is Gavin losing his vision or is something else wrong?
Cleveland Clinic / Gavin / My thoughts / Optometry / Pediatric Neurology

Is Gavin losing his vision or is something else wrong?

We have a super long day ahead of us. It begins with early morning bloodwork and getting the kids ready to spend the day at my parents house. While the boys are at my parents house, the rest of us will spending the day at the Cleveland Clinic. Gavin has a long day of testing at the afore mentioned Cleveland Clinic. The purpose of this testing is to rule out and or discover the cause of Gavin's vision problems. For awhile now, Gavin's been experiencing periods of time where his vision goes completely black, like someone turned out the lights. We have been unable to determine the cause of these episodes and our goal for today is to at least rule a few things out. There are two areas of…

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January 2, 2018