Ehlers Danlos Archives - Page 98 of 101

This has been hard on my kids with #Autism

One of the things we try to do as Autism parents is control as much going on around us as possible. We don't do this because we're inherently control freaks, we do it because we try to limit the things that can cause our kids distress. Sometimes we have some control but more often than not, all we can do is deal with the fallout. We're living in one of those times right now. Last night we had a really bad storm knock down part of a tree, causing damage to our house and a massive amount of damage to our yard. We're very fortunate that it isn't worse than it is but the kids are struggling right now, Emmett especially. They are freaked out by what happened, the damage,…

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September 22, 2018

My thoughts

So yeah, it’s worse than I thought

When I woke up this morning, I had actually forgotten about the enormous section of tree up against our house. When I did remember, the first thought was how lucky we were that it wasn't any worse than it was. That's still true but thinking that somehow made it seem like is really wasn't that bad. You can read in more detail about what happened by clicking here. I was very quickly jolted back to reality when I stepped outside to survey the damage this morning. It's absolutely true that we are insanely lucky that things aren't any worse then they are. In fact, I can't begin to explain how it isn't worse. We're talking inches of clearance in some areas and if it had landed only inches to the…

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September 22, 2018

Blessings / Gallery / My thoughts

It’s pretty bad but thank God no one was hurt

My thoughts are scattered. As a result of tonight's events, my stress level and worry are at all time highs. It's probably best if I just start at the beginning because I'm sorta processing all this in real time. My feeling are still raw and I'm unsure of what's going to happen. Pictures are on the last page. I learned that both Elliott and Emmett were having a rough day after I picked them up from school. Elliott had his mechanical pencil stolen and Emmett had his water bottle stolen. Neither of these things are huge deals to me but to the boys, it's was a huge deal and a betrayal of sorts. Things have been tight financially and so we haven't been able to really do anything that wasn't…

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September 21, 2018

Fibromyalgia / Lizze / My thoughts

I’m so proud of my wife today

The boys got off to school this morning without trouble. Lizze and Gavin came with us because we were going to hit the park and go walking before returning home. Walking isn't always easy but Lizze did really good this morning. We went for just under a mile and a half. Gavin did well also and didn't complain abiht anything the whole time. Sometimes Gavin will experience joints popping out of socket while walking and that's very painful. Everything went smoothly for him and that's always a good thing. The walk was shorter than I would do on my own and that's okay. I'll make a second trip later today and get some more time in. I'm so proud of Lizze because I know how hard this is for her…

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September 21, 2018

Gavin / IVIG Infusion / My thoughts

I could and even should be angry but that would only hurt me

This is a little frustrating. I wasn't here when Gavin's infusion supplies were delivered at the beginning of September. Normally, we check them right away and make sure we received everything. For whatever reason, that fell through the cracks this time. Gavin informed us that he was short three needle sets last night. He received his infusion today but is out of needles for the rest of the month. I wasn't upset because while this has been very problematic in the past, they've been doing pretty well recently. Sometimes things happen and there's no sense in getting all worked up over it. I calmly called this afternoon and explained that we were shorted the needle sets. The pharmacy said they would get them out to us on Monday. I said…

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September 21, 2018

Autism Parenting Struggles / Emmett John / Feeding Problems / My thoughts / Sensory

It’s so hard to feed my kids with #Autism

We're having a really hard time finding food that Emmett will eat, especially while at school. He's never eaten the school lunches because he's incredibly sensory oriented. It just won't ever happen and that's okay. The problem is that's it's become increasingly more difficult to find things we can pack in his lunch, that he'll actually eat. We've had temporary successes but nothing ever really lasts for too long. Once he stops eating something, he'll likely never touch it again. It's important to understand that this isn't him being picky. This is something he has no control over and while we try to work with and encourage him to try new things, there isn't a great deal we can do but keep trying. The difference between a picky eater and…

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September 21, 2018

My thoughts

Hopefully we’ll beat the incoming bad weather

Everyone is dragging this morning but cooperative. It's been a long week and it's finally Friday. I don't think there are any plans this weekend but maybe we'll go hiking. After we take the boys to school, Lizze, myself and Gavin are going to go walking. Hopefully, we'll beat the incoming bad weather.

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September 21, 2018

Cleveland Clinic / Lizze / My thoughts / Pain Management

Here’s how our appointment with Pain Management went

Lizze and I met with Pain Management at the Cleveland Clinic yesterday. The objective of this appointment was to find ways to help Lizze manage her dibilating chronic pain. Lizze is living with Fibromyalgia, Ehlers-Danlos and daily migraines. As anyone dealing with chronic pain will likely tell you, it's exhausting, and it has a profoundly negative impact on your life. Lizze's pain impacts every single aspect of her life and has since 2004, when she was first diagnosed with Fibromyalgia. Our reason for seeing pain management was to help her better manage her pain and maybe, get some of her life back in the process. There was a great deal of discussion that occurred during the appointment and her new doctor is really cool. I liked him but most importantly,…

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September 21, 2018