IVIG Infusion Archives - Page 145 of 181

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,…

6 Comments

September 21, 2018

My thoughts

I’m getting out for a bit tonight

This evening I'll be participating in a guys night out for the first time in a while. It's usually my Dad and friends of the family or from church that get together once a month. I've only gone once before and it was a lot of fun. I'll only be gone about two hours and so I don't stress out too much about being away. Life isn't easy. I'm trying to take advantage of moments like this because it allows me to step outside my comfort zone and sorta decompress for a little bit. Speaking for myself, but I know many of you out there get this, as much as I need a break, I'm always nervous about taking one. It seems counterintuitive but it's just something I struggle with.…

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September 20, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

Why am I so exhausted? I’m an #Autism parent, that’s why

Going into this post, it's important to know that I'm frustrated and trying to make a point about why Autism parents, like myself are so exhausted all the time. Every time I'm asked why I'm so exhausted, it's a reminder how little people understand the challenges I face as an Autism parent. I'm absolutely venting but trying my best to do so in a way that helps to put things into perspective. I shouldn't have to say this but I love my kids and Autism is part of who they are. I accept them and love them just the way they are. The reality however, is that Autism can make things very, very difficult. If you can relate to this, please show your support by clicking the Like, Share or…

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September 20, 2018