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.


Fingers crossed and prayers sent

This is take two for this post cause the first one glitched out and disappeared. I'm gonna try to reproduce it as best I can. I played phone tag with Akron Children's Hospital today. I called this morning to get the results of Gavin's labs from last week and it turns out, they never received the results. We went back and forth a couple times but finally connected in the late afternoon. The nurse had managed to get the results and it turns out Gavin's labs came back normal. I love hearing those words in the same sentence when referring to Gavin. That was good news and it meant that we could move forward with his endoscopy. She went over the intake questions and when we hit the one about…