My son with #Autism and #FragileHealth is back at the @ClevelandClinic today

The boys got off to school okay. Emmett had another rough start, but he got through it. Lizze and I are left a bit frazzled, but he was feeling better when he walked into the school.😀 We have a day of driving ahead of us. Gavin has to be at the Cleveland Clinic for a visit with his neurologist. It's one of those frustrating appointments, only because it will be a 3-hour drive for a 15-minute consult. His doctor is fantastic, and it's essential that we get him there. It's just a lot of driving in a car that's not doing well. Anyway, with any luck, well be back in time to get the boys from school. If we're not, Lizze's Mom will grab them for us, and we'll pick…


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…


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…

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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…

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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…


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.. ☺


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.


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…