Read more about the article Hello Pain Management at the @ClevelandClinic
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…

0 Comments
September 19, 2018
Read more about the article We’ve made it to our 1st appointment at the @ClevelandClinic today
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…

0 Comments
September 19, 2018
Read more about the article There’s so much riding on today
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.…

3 Comments
September 19, 2018
Read more about the article Today almost didn’t happen
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…

2 Comments
September 19, 2018
Read more about the article I’m not in a good place tonight but here’s what happened with Gavin today
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

I’m not in a good place tonight but here’s what happened with Gavin today

I'm not in a really good place tonight. It's been an exceptionally long day and I'm not sure how to begin digesting today's appointment. This will be brief and you can then check out a few pictures from today. [foogallery id="82317"] Basically, we don't know what's going on with Gavin's legs. Neurologically, he checked out, at least in that area. That's the sorta good news. What's next is bad news but not necessarily new bad news. His neurologist examined Gavin. While he was doing so, we somehow got on the topic of Ehlers-Danlos, how Lizze has it and it's believed Gavin does as well. Basically, Gavin's skin has become extremely elasticy (I don't know if that's even a word). It's sorta like if you're wearing a pair of loose fitting…

2 Comments
September 4, 2018
Read more about the article My kids with #Autism don’t do well with change but as their parent, I sure as Hell better be able to adapt
Autism Parenting Insight / Cleveland Clinic / My thoughts / Pediatric Neurology

My kids with #Autism don’t do well with change but as their parent, I sure as Hell better be able to adapt

I was already on edge about our trip to the Cleveland Clinic this morning but our plans took a sudden, unexpected turn a few hours ago. First of all, I've said this a million times but it's worth saying once again. As an Autism parent, I have to be flexible. My loved ones with Autism don't like change but I damn sure better be able to adapt or life is run me over. The plan for this morning was a simple one. Lizze's Mom was going to pick the boys up and take them to school because we can't be in two places at once. We would take Gavin to Cleveland, deal with whatever resulted from this appointment, get his bloodwork done in the way home, hit the BMV for…

1 Comment
September 3, 2018
Read more about the article I’m really worried about Gavin’s appointment at the @ClevelandClinic in the morning
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

I’m really worried about Gavin’s appointment at the @ClevelandClinic in the morning

I'm really nervous about Gavin's neurology appointment at the Cleveland Clinic in the morning. To be completely honest, I'm sick to my stomach over it. I love Gavin's doctor and I love the Cleveland Clinic. Without hesitation, I can say that they are a large part of the reason Gavin's still with us today. That's not something I could ever pay back. The appointment tomorrow is all about Gavin's problems with his legs. He's been complaining on and off for awhile now, that his legs stop working. It's tough to understand what exactly he means by that because I'm not sure he knows how to describe it or that he understands what he's talking about. Essentially, he's saying that his legs stop working because they aren't doing what he's telling…

1 Comment
September 3, 2018
Read more about the article Gavin’s health isn’t doing so well
Akron Children's Hospital / Cleveland Clinic / Gavin / My thoughts

Gavin’s health isn’t doing so well

I've had a very busy afternoon of scheduling doctors appointments for Gavin. I bounced back and forth between Akron Children's Hospital and The Cleveland Clinic for what seemed like an eternity. After all the calls, I only ended up with one appointment so far. On September 4th, Gavin will return to his neurology specialist at The Cleveland Clinic. Normally Gavin goes there for his autonomic disorder and epilepsy but this time around is different. Gavin has been telling us that his legs aren't working right. We haven't been able to get more reliable information out of him but it sounds like his legs are giving out. We haven't seen him fall but it seems like he's having issues with his legs supporting his weight. That's a problem. We don't know…

5 Comments
August 27, 2018