I'm going to bed early because we're starting our day at 5AM. It's going to be a long morning and I'm not sure how it's going to go. I haven't been sleeping well and I'm hoping to get enough to make battling traffic something I can handle. lol The boys are at my parents house tonight and we'll pick them up on the way home. Hopefully, everything will go well and we can move on with the rest of the week.
We were able to reconnect with Gavin's MyChart account this week. When he turned 18 this past January, his account was closed and he needed to open up a new one. MyChart, for those unfamiliar with it, is an app that connects you with places like the Cleveland Clinic and Akron Children's Hospital. It gives you access to your medical records and future appointments. You can request prescription refills and even schedule an appointment or send a message to your doctor. It's pretty amazing. When I set this up for all three of the boys, I had access to all three under one account. As a parent, this is very, very helpful and like I said, when Gavin turned 18, he automatically dropped off. Getting account access back is complicated…
We have a conundrum and aren't sure what the right thing to do is. In less than 24 hours, we return to Akron Children's Hospital for pre-testing and consultation in regards to Gavin's endoscopy and colonoscopy, which is a bit more complicated because of Gavin's health issues. At this point in time, Gavin either doesn't know or doesn't remember that he's having these done in June 5th. When we arrive at Akron Children's Hospital tomorrow for the meeting, we're going to be going over in great detail, all that's going to transpire. Our concern is that Gavin is going to freak out. For an average person, these things can be scary but for an 18 year old with the mind of a 6 year old, it could end up being…
It's been a long and exhausting day. Gavin has been struggling a bit and I have to tell you, as frustrating as his behaviors are for me, the most overwhelming emotion I feel is heartbreak. Gavin drives me completely bonkers. I'm not ashamed to admit that and I own it 100%. At the same time, it's heartbreaking to watch him devolve to where he is, especially knowing there's nothing I can do to stop it. As his parents, we love him unconditionally, as we do his brothers. There's nothing he can do that will ever change that. Sure, he drives me crazy but he doesn't have the market cornered on driving me crazy, his brothers do a decent job of that in their own way. Having to watch someone you…
Gavin's appointment went really well. I mean, we don't know the results but Gavin physically did pretty good. He could follow directions and it took a little bit because they had to make more stuff for him to drink. I can't say enough positive things about how nice everyone was. They were very patient and not that I need to explain to anyone because it's painfully obvious, but they recognized his cognitive impairments and handled him very well. We don't know the results but we'll get them at his next follow-up. If there's a major issue, they'll call us first.. Thank you Akron Children's Hospital, you've never let us down and always treated us with respect. [foogallery id="80856"]
We're getting ready to leave for Akron Children's Hospital after a night of little sleep. Lizze and I have both been dealing with insomnia recently and it's making life even harder than it already is. I'm not sure what's causing our sleep disturbances but I bet you a shiny buffalo nickle that it has to do with stress. We are both extended about as far as we physically and emotionally can be. In fact, we're significantly over extended. Lizze can fall asleep but won't stay asleep and I can't fall asleep but will stay asleep, if that makes any sense. Anyway, we're both exhausted and exceptionally grateful that her parents volunteered to keep Elliott and Emmett overnight so we can get Gavin's testing done without having to worry about the…
One of the things I mentioned that had come to light during Gavin's visit to the Gastroenterologist last month was that Gavin is having a hard time swallowing. Why we were only just hearing about that is just one of the many frustrating things about trying to manage Gavin's health. He simply didn't think it was worth telling us about. WTF?? This kid tells me every bizarre thought that pops into his head and it drives me fricking crazy but when it's something this important, he says nothing. Aghhhh Anyway, in a few hours, we will be heading to Akron Children's Hospital because Gavin is having a swallow study done. This is where he'll be drinking a liquid laced with something that makes it show up on x-ray and they…
The fam and I are heading to the in-laws house for a nice, quiet Memorial Day cookout. Today's an important day and we've been talking to the boys about how Memorial Day is not just a day for cookouts. Today we remember all those who've fought and died for our right to be free. Lizze and I have both had friends and family who've fought and died for our freedom. It's important to us that we never forget them dishonor their memories. We will make sure our kids know the sacrifices these amazing, selfless and courageous human beings have made in order to ensure we have the freedom we now enjoy. Please remember all who have come before us and made the ultimate sacrifice to defend our country. I'm going…