The @ClevelandClinic is probably getting sick of us

We got the boys dropped off and made our way back to the Cleveland Clinic again today. This time we're at the Medina location because that's where her orthopedic specialist is. We have a crazy long day ahead of us and plenty of time to wait between appointments. Lizze is getting an x-ray of her knee first; then she sees her doctor. About two hours after that, she has an MRI with contrast of her brain. This is related to her migraines. You may remember that Lizze has what her old neurologist called, a brain full of cysts. They are not believed to problematic, but her current neurologist at the Cleveland Clinic hasn't seen them, and he wants to make sure all is well inside her dome. We have always…

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It’s eerily quiet in my house right now

It's super quiet in my house right now, and that rarely happens, but I like it. Emmett is watching a video, Gavin is sleeping off his morning meds, Elliott is just sleeping, Lizze is getting ready for her appointments, and I'm writing this. 😊 We have a long day ahead of us, and on the other side of it, we'll know how bad Lizze's knee is and what kind of surgery is necessary. I know she's really nervous, but today is just about gathering information. I'm hoping that anything she needs to have done is minor in nature. It seems like everyone in my life right now is undergoing knee replacement surgery. I'm not sure her knee is that bad, but we'll soon find out. Please keep her in your…

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This sums up our trip to the @ClevelandClinic today

It's been an incredibly long day, and I'm exhausted. For those tardy to the party, Gavin and I spent the day with our friends at the Cleveland Clinic. He was undergoing neuropsych testing. The purpose was to benchmark his level of function across several categories and compare to his baseline testing from 2014. We've seen what feels like significant regression over the last few years and his neurologist ordered neuropsych testing to establish where his new or current baseline is. Doing so will give us a better understanding of what's changed over the last five years, and we can do to better support him. His testing went well. I think it was roughly here hours long. He finished the entire process this time, and while he did get frustrated, he…

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UPDATE: A little bit about the neuropsychological testing and how things are going so far

I don't know if you're familiar with neuropsych testing, but here it is in a nutshell. According to my friends at the Cleveland Clinic, "a neuropsychological evaluation is a test to measure how well a person's brain is working. The abilities tested include reading, speaking, understanding, paying attention, and remembering." We've been here for about four hours so far, and I filled out paperwork when we first got here. Then there was a lengthy interview process with tons of more targeted questions. Gavin isn't able to really answer the kinds of questions being asked, but he was able to rattle off needed dates for a few things like it was nobody's business . 👍 Gavin was very preoccupied with having not eaten lunch, and the doctor said I could bring…

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It’s going to be an incredibly long day and I’m already exhausted

I'm feeling incredibly overwhelmed right now. We made it to the Cleveland Clinic without any problems other than a minor detour. Gavin is checked in, and we're waiting our turn. The paperwork was a bit overwhelming because of Gavin's history being so extensive. It's a lot of information to squeeze into a tiny space, and I eventually gave up. They're going to go over everything again in our initial interview this afternoon anyway, so we'll clean that up then if need be. Gavin's in a really good mood, and he remembers being here previously. He also remembers how badly it went the last time. He feels that he's older now and should be able to handle these questions without much of a problem. I think that's a great attitude and…

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It’s total chaos this morning

Today has turned into chaos. I had everything planned out, and we were going to be dropping the boys off at Lizze's parents before high tailing it to the Cleveland Clinic for Gavin's long afternoon of testing. Unfortunately, Lizze woke up super early this morning and was in excruciating pain. Nothing is helping, and she's in so much pain, that she's sick to her stomach. There's no way she can make the trip. We're running behind, the house has erupted into chaos, and I'm stressing out cause I hate doing these things alone. I'm very capable, but I don't like doing them alone. Lizze always has great insight, and with both of us there, we have the bases covered. I'm not mad at all. I'm just not excited about the…

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Gavin has major testing today at the @ClevelandClinic

Today is a massive day for us. Gavin will be spending the day at the Cleveland Clinic for one of the most critical appointments he's had in a very long time. Gavin will be undergoing another round of neuropsych testing. It's been many, many years since he went through this battery of testing the first time and it's long overdue. It's very difficult to get in to have this done because they were booked out so far into the future. We also had insurance issues that indefinitely delayed things as well. Click here for previous posts on neuropsych testing and why it's important. Basically, Gavin will undergo hours of psych testing today. The purpose of this is to see where he is cognitively, as well as emotionally, and compare it…

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My 19-year-old #Autistic son has a touching moment with my grandmother

Gavin is my 19-year-old Autistic son. While he's 19 years old on the outside, he's about 5 or 6 years old on the inside. This presents many challenges for him, many I talk about on this blog. One of the significant challenges for Gavin is pretty much anything to do with emotion. He's always struggled with emotion, which isn't uncommon for people on the Autism Spectrum. Gavin has never been able to express himself easily, and that has led to frustration on his part but also our part as well. Autism is a complicated and misunderstood human condition. In Gavin's case, he also has schizophrenia as well and that further complicates things. He's often out of touch with reality and off fighting battles in another Universe where he's a superhero.…

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