Cleveland Clinic Archives - Page 3 of 4

Here’s how our appointment with Pain Management went

Lizze and I met with Pain Management at the Cleveland Clinic yesterday. The objective of this appointment was to find ways to help Lizze manage her dibilating chronic pain. Lizze is living with Fibromyalgia, Ehlers-Danlos and daily migraines. As anyone dealing with chronic pain will likely tell you, it's exhausting, and it has a profoundly negative impact on your life. Lizze's pain impacts every single aspect of her life and has since 2004, when she was first diagnosed with Fibromyalgia. Our reason for seeing pain management was to help her better manage her pain and maybe, get some of her life back in the process. There was a great deal of discussion that occurred during the appointment and her new doctor is really cool. I liked him but most importantly,…

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September 21, 2018

Cleveland Clinic / Fibromyalgia / Lizze / Migraines / My thoughts / Pain Management

Hello Pain Management at the @ClevelandClinic

After a quick lunch, we've made our way to Pain Management. It was about a 35 minute drive from the main campus. We realized that we been to this location before. It was many years ago when Gavin was little. This is where he saw his first Cleveland Clinic Neurologist for his movement disorder. It's been a long time but it brought back some memories of the very early days in Gavin's health journey. Anyway, we're actually a bit early but she's checked in and filling out the questionnaire. They said she might be able to get in early. ☺ Lizze and I have come up with a list of questions, so we can maximize the time we have here today. I saw someone asked in the comments on the…

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September 19, 2018

Cleveland Clinic / Lizze / My thoughts

We’ve made it to our 1st appointment at the @ClevelandClinic today

We've had a crazy busy morning, also got run off the freeway by someone texting and driving but we've finally made to the Cleveland Clinic. It's been chaotic thus far but we made it safe, sound and on time. ☺ If you've never been to the Cleveland Clinic, it's a top 2 hospital in the entire country and we're lucky enough to be within about an hours drive away. The main campus is amazing and the doctors are literally the best in the world. Gavin and Lizze receive most of their medical care at the Cleveland Clinic and I can't say enough about the quality of care they received. Aside from being a fighter, I firmly believe Gavin is alive today because of his specialists here, especially his Neurologist. One…

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September 19, 2018

Cleveland Clinic / Fibromyalgia / Lizze / Migraines / My thoughts / Pain Management

There’s so much riding on today

Thankfully, Emmett's in a good mood this morning because we finally understand why he's been so frustrated with school and no longer wants to go. Hopefully, we'll get some answers this morning and can put his fears to rest. I'll explain more when I can. He's not being bullied or anything like that. This has to do with what appears to be a classroom policy. After that, the biggest thing we have going today is one of Lizze's appointments at the Cleveland Clinic. One of her appointments today is very important, while the other is a routine follow-up. Lizze is going into the pain management program at the Cleveland Clinic. We're heading to the amazing @ClevelandClinic today in order to find relief for my wife, who's living with chronic pain.…

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September 19, 2018

Cleveland Clinic / Fibromyalgia / Lizze / Migraines / My thoughts

Today almost didn’t happen

We have an insanely busy day ahead of us. It will begin by meeting with Emmett's teachers because he came home today and requested that we pull him from the school. I can't go into what's going on until I meet with the teachers and gain more insight. Lizze and I will leave from the school and head to the Cleveland Clinic, where we will spend the rest of the day. Lizze has a string of appointments and they begin first thing and won't finish until dinner time. It's going to be an exceptionally long day and unfortunately, these appointments aren't all in the same location which means there's going to be a good deal of driving. Things are a bit tight in the financial department at moment and trips…

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September 19, 2018

Akron Children's Hospital / Autism Parenting Confessions / Autism Parenting Insight / Gavin / Hematology / Inspirational Posts / My thoughts

As a general rule, I don’t apologize for any of my kids with #Autism but this is one exception

I mentioned in a previous post that something happened yesterday while at Gavin's hematology appointment. Akron Children's Hospital was great, they always are. You have to understand something before we go any further. This appointment took place where Gavin used to receive his IVIG infusions. We're very familiar with this place after years of visits. Gavin is a sweet kids and doesn't have a mean bone in his body. He would never intentionally try to hurt someone or say something that caused someone pain. Unfortunately, along with missing mean bones, he's also missing a filter. It's not uncommon for kids on the Autism spectrum to lack a verbal filter. They basically say it how it is, and are unburdened by things like inhibition. Typically, kids with Autism don't lie. They…

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September 8, 2018

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

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