Returning to Cardiology at @AkronChildrens Hospital today

Gavin and I will be heading off to Akron Children's Hospital once again today. We were able to get an immediate appointment in cardiology and that's crazy fast. This is a very important follow-up in regards to Gavin possibly having Marfan Syndrome. We've been down this road before but the doctors at Akron were very concerned about how Gavin physically presented and wanted him to have an echocardiogram before we proceed with his scopes. I'm not sure he will get his echo today but we're seeing the cardiologist in order to figure out how to proceed. Gavin's not nervous because he doesn't understand what's going on but he knows there won't be any needles. The echo is noninvasive and he's had a few of them done already. We just need…

2 Comments

We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures

Gavin's a bit nervous but doing well. He's very focused on the IV heading his way and is trying to talk himself through it. He brought a stuffed animal with him to help him be brave, his words not mine. We're waiting for the doctor and anesthesiologist to come talk to us before they take him back. Gavin of course, has some questions a out the IV he's getting but aside from that, everything has already been answered that can be answered. We'll likely be here for a few more hours at the very least. As far as I know, Gavin won't be able to really eat anything substantial until later in this evening. Maybe I've misunderstood but either way, Gavin's done remarkably well with not eating. We're super proud…

0 Comments

Please keep Gavin in your thoughts and prayers this morning

Gavin has now gone more than 24 hours without eating. For someone who loves their life around eat meal of the day, that wasn't easy and it's still going to be almost half a day before he's able to eat. We will arrive at Akron Children's Hospital in about 2 hours, and his scopes are planned for noon. It's going to be a long morning and afternoon. As of right now, Gavin's in good spirits and we have hope that he will be just fine. We know he'll be physically okay but emotionally, he's going to likely struggle, at least in the short term. For now though, he's relaxing and playing his tablet. Please keep Gavin in your thoughts and prayers this morning. I know that I will definitely appreciate…

3 Comments

#Autism further complicates an already unpleasant situation

This is going to be a fricking nightmare. It already is. Gavin has begun the pre-op cleanse if you will. If that wasn't bad enough, he's not allowed to eat anything for at least the next 28 hours. For most people, a 28 hour fast would be very difficult. Gavin however, isn't most people. His life revolves around two things, his tablet and food. Food is such a huge thing for him and he becomes very unpleasant to be around when any of his meals are perceived to be late. To say that Gavin is food motivated would be an enormous understatement. He already ate breakfast before we could get to him this morning but the hospital said it was okay, as long as he eats nothing else. To make…

4 Comments

Worst Day Ever – Maggots, ice and a basement full of sewage

I've been a bit overwhelmed since yesterday evening and I haven't written. I wanted to take a minute and vent because I'm on the brink of insanity. We went to the Farmer's Market yesterday and if you follow me on social media, you already know the nightmare that brought with it. The Farmer's Market is an amazing place. Our goal is to eat healthier and do so in a way that's affordable, while supporting our local community. Our haul was impressive. Here's everything we got for about $60: Flat of strawberries Flat of blueberries 8 lbs of peaches and plums 5 lbs of potatos 8 lbs of purple grapes Green onions 3 lbs of cherries 7 lbs watermelon 6 lbs of clementines I can't remember the rest but suffice it…

1 Comment

This goes in the win column

We managed to beat the bad weather this afternoon and sneak in a a roughly 30 minute walk. It's the first family walk we've gone on in at least a week. One of my goals this summer is to get the kids out walking at least a few times a week. We are going to explore some of the Stark Park hiking trails in order to keep things interesting. Everyone did great while we were out. Not only that, but it was a device-less walk as well. That means there was no Pokémon hunting being done. The boys were outside, not playing video games and enjoying the weather. ☺ I'm going to stick this right into the win column..

0 Comments

It’s a bittersweet blessing

I went back and forth a few times with multiple people from Akron Children's Hospital this morning, trying to figure out the missing lab work thing. I'm happy and relieved to say that I think we're good now. ☺ We have the pre-op prep instructions that he will begin on Monday and while unpleasant, it should be okay. Lizze and I have both twisted ourselves up over this set of procedures that Gavin will have done on Monday. While a colonoscopy and endoscopy aren't catastrophic in nature, it's not something many 18 year olds have done. I'll be 40 in August and I've never had one done. We never want to put any of our kids through anything that's unnecessary, especially if it's more invasive. The reality is, Gavin can't…

0 Comments

Pre-testing at @AkronChildrens Hospital went better than expected

It's been a really long and emotional day. I wanted to quickly let you know how testing went this morning at Akron Children's Hospital. This was all in regards to the medically necessary procedures Gavin needs to have done on the 5th of June. We had been concerned about how he would react to learning what was going to be taking place. Gavin was never going to refuse anything but we were concerned that he would be freaked out after learning about what a colonoscopy and endoscopy are all about. There was never going to be a challenge gaining Gavin's cooperation because that's just how Gavin works. We were simply worried that he would panic and be freaked out for the next 5 days until he was scheduled for surgery.…

0 Comments