This is what’s going to happen at the @ClevelandClinic today

Here's the game plan for today. Shortly after taking the boys to school, we have to get Gavin to Dr. Reynolds for a follow-up and to discuss how he's doing since lowering the Clozapine dosage. The appointment is pretty early so we should be his first or second patient, meaning it won't take all day. 😀 On the way home, we will take Gavin for his weekly bloodwork before returning home to eat a quick lunch and then head to Cleveland for the rest of the day. Assuming we aren't back in time to get the boys from school, my Mom is going to pick them up and hang out with them until we get back. I'm pretty sure this is a 3 hour EEG so we likely won't get…

3 Comments

Did you know one of my kids has #epilepsy?

This week will find us returning to the Cleveland Clinic for Gavin once again. This time it's for an epilepsy appointment with his neurologist. He's scheduled for a 3 hour EEG. This will hopefully give us an idea of where he is in regards to his seizure activity. Gavin has always had absence seizures and they are very hard to detect. Most commonly, when these occur, he will appear to be staring off into the distance. He's not aware of anything happening but he's not even close to someone who can accurately describe what he's experiencing. Kids with Autism can also have staring spells and it's not related to seizure activity. Unfortunately, in Gavin's case, he was diagnosed with epilepsy many years ago but thankfully, it's never been a major…

0 Comments

Well shit, that didn’t go as planned

It's been a really long day and it's only 3:30 PM. I'm actually feeling much better today and want to give a big thanks to the inlaws for chillin' with the kids while I took Lizze to her doctor at the Cleveland Clinic. I have to say, the traffic was good and we made excellent time. ☺ Unfortunately, when we arrived at the doctors office, Lizze was informed that her appointment was at the other location. Considering we didn't even know there was another location, it was a bit frustrating. Apparently, her doctor has begun seeing patients in a second location as well. In all the years Lizze has been a patient, the appointments have always been in the same place. Lizze's appointment ended up being in this new location,…

0 Comments

Bad news

I've been continuing to follow up in regards to Gavin's NeuroPsych testing scheduled for tomorrow. After a few attempts to connect with our case manager, I haven't heard anything back. As a result, I called the Cleveland Clinic directly, checked on the status and I'm glad I did. Insurance has denied Gavin's claim three times this week already, the last being yesterday. Unbeknownst to me, the appointment had been canceled. I'm glad I did my due diligence because otherwise I would have hauled Lizze and Gavin to the Cleveland Clinic at a Godawful hour, only to find that we no longer had an appointment. The only reason I would have assumed anything in the morning is because I was told by the Cleveland Clinic eariler in the week that the…

6 Comments

Insurance won’t pay for Gavin’s testing

We have another issue that I haven't spoke about yet but as the day is drawing closer, I should bring you up to speed. When Gavin saw his pediatric neurologist st the Cleveland Clinic last month, it was decided that he needed three additional appointments. The first appointment was with the Cole Eye Institute because the doctor suspects that the lens in each eye has become detached. It apparently requires a special exam and wouldn't otherwise be detected. This would explain the visual problems he's been experiencing. The second appointment was an EEG. Gavin hasn't had a witnessed seizure in a long time but he is epileptic. The doctor wants to make sure everything is okay. The third and arguably most important appointment is supposed to take place in two…

4 Comments

How Gavin’s appointment went and why I’m so overwhelmed

We were gone for most of the day and it was an exhausting day at that. I want to start by thanking my Mom for helping out with the boys yesterday. We truly appreciate it. There was a lot of construction on the way to Cleveland but the drive was only about one hour and twenty minutes. The trip home was a bit longer but not too much. There were some idiot drivers out there and one major accident but the trip was relatively smooth. ☺ We were headed to Cleveland in order to meet with Gavin's neurologist, in regards to his autonomic dysfunction. [foogallery id="65530"] There was a great deal discussed and autonomically speaking, he's very happy with Gavin's stability. It's been about three years since his last major…

4 Comments

We have am extremely important appointment today for Gavin

It's going to be super busy today. After taking the boys to school in the morning, I have to take Lizze to her first of two doctors appointments. While she's there, I'm going to meet my Mom at the park and try and squeeze in about four miles. After lunch, Lizze has her second appointment of the day. The moment she walks out of her appointment, we are heading straight to the Cleveland Clinic for a late afternoon appointment with Gavin's neurologist. This is really important for a few reasons but the biggest is to assess where he is neurologically, compared to where he was previously. We also have to discuss his vision issues because if his eyes are checking out, it's likely to be neurological in nature. At least…

0 Comments

There’s a lot to process after her appointment today

We just got home from our trip to the Cleveland Clinic. The kids are picked up and ready to go to Lizze's parents for the night. Lizze and I are both exhausted, and looking forward to a nap when the boys leave.  As far as Lizze's appointment goes, there are some major changes she has to make to her life. Most of those changes are dietary, but she's also permanently placed on a low dose antibiotic.  She's got a great deal to process right now and will probably share all the details on her blog, when she's ready. If not, I'll be sure to keep you updated as best I can. 

0 Comments