Today's Victory Archives - Page 2 of 6

We take #vaccines VERY seriously but had to play catch-up today with our youngest and here’s why

I'm going to focus on the positive tonight. There was plenty of things that didn't go right, but the ones that did, matter more in this very moment. I mentioned earlier that Emmett had an appointment with his pediatrician today. It was a combination med check; well check and physical. We needed to touch base in regards to his ADHD and Depression medications before his care transfers to the behavioral health clinic at the main Akron Children's Hospital campus. He also needed his 11-year check-up and physical. Part of that included discussing vaccines. Emmett is the only one of our three kids who's technically behind on his vaccines. Emmett has a rare fever disorder and has had it since he was about a year old. His symptoms have evolved over…

4 Comments

August 2, 2019

My thoughts / Today's Victory

How we salvaged the day by surprising our kids

I didn't sleep well last night because my restless leg was keeping me awake. I was unable to go walking because of HOF week. To say I was in a bad place yesterday morning would be an understatement. The boys were fighting, and we needed a reset. Hiking was out of the question due to the threat of severe storms. We didn't want to be out in the middle of the woods when it hit. Anyway, we opted to fulfill our promise to the kids in regards to taking them to see Spider-Man Far From Home. It was very impromptu, which we usually wouldn't spring on the kids but I wanted to disrupt the current path we were on, so we could reroute our course for the day before nose…

1 Comment

July 31, 2019

My thoughts / Today's Victory

Frustrating moments but I feel like progress was made

We had therapy tonight, and some interesting things happened. First of, for the most part, everyone got along well. That's always something worth celebrating. While it wasn't perfect and Gavin lost his cool, he also worked through it pretty quickly. The issue with Gavin today happened as a result of Gavin struggling to understand some basic concepts. The kids were playing monkey in the middle with one of those soft, indoor frisbees. There is limited space to play, and in order to keep things, boundaries needed to be established. The person in the middle had to stay inside of the established lines, and the people not in the middle had to stay outside the established lines. It's a very basic and fundamentally simple concept that everyone agreed on prior to…

9 Comments

July 31, 2019

My thoughts / Today's Victory

Today’s Victory: It’s a been a pretty f*cking awesome day and here’s why

Today had its moments but overall, I feel really good. There are a few things I'd like to celebrate tonight before I hit the sack and start this whole thing over again in the morning. First of all, in a pretty major win for Mr. Gavin, he performed is own IVIG Infusion today and it didn't leak. He did the entire thing, start to finish, and didn't have a single issue. A little tough love was required to get him there, but he was really proud of himself when it was all said and done. ☺ I was able to get my walk in before dinner time. I was up all night last night because my leg was driving me fucking crazy. Once I did fall asleep, I opted to…

4 Comments

July 27, 2019

Gavin / My thoughts / Today's Victory

Today’s Victory: My oldest accomplished something amazing

As I chill on the couch tonight, unable to sleep again because of my fricking leg, I thought I would get my super positive post from yesterday caught up. I will, however, make this quick because I'm really trying to get some sleep. Long story very short, I opted to go help my parents by cutting their grass last night. My dad is working a great deal and his knee is bad. My mom just had her knee replaced and better not even be thinking about cutting the grass. I'm watching you mom. 😉 Anyway, we all went over and everyone played a role in helping. Lizze spent the time with my Mom. Elliott and Emmett took Ruby and Cleo (my parents dog) for a walk. I got to use…

2 Comments

July 26, 2019

My thoughts / Today's Victory

Today’s Victory: How we recovered from an absolutely disastrous day

Nothing about today went as planned. It was incredibly stressful and frustrating because it was just one thing after another. Today was the day we were supposed to divide and conquer because Lizze needed to be at the Cleveland Clinic while Elliott needed to be at Akron Children's Hospital before we'd be back. We had worked things out and made arrangements for Lizze's mom to take Elliott to Akron while I drove Lizze to Cleveland. Unfortunately, Lizze woke up very early this morning and was not feeling well at all. There was no way she'd be able to make the 90-minute drive to Cleveland. It just wasn't going to work. She was able to reschedule, and while it threw things off a little bit, it did free me up to…

2 Comments

July 24, 2019

Lizze / My thoughts / Today's Victory

Today’s Victory: We were able to pay for my wife’s medication

Today's victory is a bit unique but also something I think people can relate to in a general sense. Money is very tight this month and we're really struggling. We have a great many medical issues that we're contending with and most of them require medication. We're very lucky that most of our medications are covered but there's one in particular that isn't and it's pretty expensive. As many of you know, Lizze is dealing with severe chronic pain from fibromyalgia, Ehulers Danlos, and chronic daily migraines. She's also being treated for PTSD and has pretty severe social anxiety issues. For the last decade, we've tried every medication that was appropriate for her situation, as well as any therapies. Unfortunately, nothing has ever really helped. Her migraines haven't responded to…

10 Comments

July 24, 2019

Lizze / My thoughts / Today's Victory

Today’s Victory: It looks like physical therapy is a go

There are many things that happen in the course of the day for an Autism or Special Needs family. Frankly, things move so fast that it can be very difficult to keep up. Speaking for myself, it feels like I spend most of my time, running around putting out fires. It's even more difficult when the other parent is chronically ill because life becomes infinitely more complicated in pretty much every way imaginable. Lizze is dealing with lots of health issues; most impactful are those related to her chronic pain. She's made tremendous progress over the years and there's hope that things will continue to improve. The reality is that living with things like Ehlers Danlos, fibromyalgia and chronic migraines can't possibly be understood unless you're loving it first hand.…

2 Comments

July 22, 2019