Ehlers Danlos Archives - Page 49 of 101

So far so good

We've made it halfway through the day, and things have actually gone smoothly. Emmett's back at school, and we're in the waiting room at Akron Children's Hospital for Elliott's appointment. A huge thank you goes out to Lizze's Mom because she was willing to hang out with Gavin after he was done with his blood work. This way we didn't have to drag him around with us all day. It wouldn't have been fun for him, and I needed a break from his constant updates about his new Keyblade. We'll get Elliott some lunch and then head back to pick up the kids when we're done here. We have family therapy at 5 PM, and then we're going to meet my family for dinner. That's a last minute thing, but…

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April 30, 2019

My thoughts

The incessant talking is slowly eroding my sanity

It's going to be a hectic day. We have four appointments to get to, and the logistics are a bit challenging. Emmett has an appointment for his legs this morning. We will drop Elliott off at school and head straight to Akron Children's. Lizze and I will need to divide and conquer because, on the way to Emmett's appointment, we have to drop Gavin at the lab to get his blood drawn for the week. After we're done, we'll drop Emmett off at school and likely head home for a short time before returning to the school for Elliott. From there we head to Akron for a few hours. Lizze's Mom is going to pick up Emmett at school, and we'll probably pick him up on the way home. We…

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April 30, 2019

Akron Children's Hospital / Emmett John / My thoughts / Pediatrics

Just added a 3rd doctors appointment this week

We already have two out of town doctors appointments this week. The first is for Elliott, and it's in Akron, and the second is in Cleveland for Mr. Gavin. This translates to a shitload of driving that will far exceed the actual time spent in each appointment. Now we're adding a third appointment. This one is for Emmett and is in regards to his leg pain. It sounds like it could be growing pains, but with all the crazy things we have going on, we'd feel better having him checked out. I'm a little concerned because he says it's his bones that hurt and that it's not muscle pain. Either way, he's struggling, and if there's something we can do to help him, we want to know what that something…

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April 29, 2019

Contributed

What Are You So Scared Of?

It sad to say but the harsh truth of living in the modern world is that most of us live our lives in fear. That might sound kind of dramatic but you can see it all of the time. You see people who get trapped in the kind of life that they never wanted and doesn't make them happy but they put up with it because the idea of something else brings with it the fear of things going wrong and a lot of people really would rather put up with an unhappy life than take that risk.

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April 29, 2019

Autism Parenting Insight / Emmett John / My thoughts

It’s unbelievable what sometimes goes into getting my kids to school in the morning

It's already been an eventful morning, after a long night. When we last spoke, it was about 1 AM, and the boys were unable to sleep. Elliott fell asleep shortly after that but Emmett could not. His legs were hurting him too much, and he ended up sleeping in between Lizze and I. I don't know if he just needed the comfort, but he did fall asleep. Emmett was very concerned about going to school today because of his legs. He has to do multiple flights of stairs, numerous times a day. He also has martial arts as well. The poor kid is having to rough go at it, and he was afraid that he wouldn't be able to do these things because they would hurt too much. I walked…

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April 29, 2019

Autism Parenting Insight / My thoughts

I hate chaos, but it’s an inevitable part of my life

I'm feeling a bit better today because I took some ZzzQuil last night, and slept like a baby. I think I actually got a solid 8 hours of sleep. That's both uncommon and awesome, all at the same time. There aren't any plans today outside of working in the house. I want to finish up the laundry and get it put away. Right now, my living room is drowning in laundry, and I desperately want out from underneath all that. I don't know if I've ever specifically spelled this out before, but I hate chaos. I hate it. Chaos is the absence of organization, and I love being organized. Unfortunately, chaos reigns supreme in my house because of the often unpredictable nature of the many Autism related challenges we face…

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April 28, 2019

Autism Parenting Struggles / Gavin / My thoughts

I’m going to bed heartbroken

We had a great afternoon/evening at the movies. Avengers: Endgame was amazing. I'll leave it at that cause I don't want to ruin it for anyone. I'm so grateful that we had the opportunity to do this as a family. ☺ Unfortunately, that's where the awesome news ends and the bad news begins. After the boys went to bed tonight, Gavin came downstairs to take his bedtime meds, but before he did that, he needed to tell us something. I've grown to dread these moments because when he says things like this, it's seldom something I want to hear about. Gavin informed us that he wouldn't be able to help out around the house tomorrow because "I'm going to be needed at HQ a lot cause Sonic has a really…

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April 27, 2019

Artwork / Autism Parenting Insight / Gavin / My thoughts

This made me smile today

It's been a rough day for a multitude of reasons. Rather than focus on the negatives, I wanted to share something a bit more uplifting and positive. I feel like it's important to focus on the positives as much as possible. I realize it's not always easy, especially for Autism parents but it's a good habit to get into. Admittedly, it's still a work in progress for me personally, but I'm making a concerted effort. That said... If you have been following for a while, you know that Gavin used to be quite fond of drawing. As his daily struggles increase and he loses touch with reality, he drifted away from his more artistic side. It was sad to see that part of him fade away because he was always…

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April 26, 2019