schizophrenia Archives - Page 165 of 303

Gavin’s surgery is now uncertain

Gavin's supposed to have an endoscopy and a colonoscopy done at Akron Children's Hospital next week. They consider this surgery and refer to it as such, so I'm doing the same. I received a phone call this morning from his Gastroenterologist. This is the doctor who ordered the non-urgent but medically necessary procedures. As a result of Gavin's recent issues surrounding his IVIG infusions, he now will need medically cleared in order to proceed. They need his immunologist to sign off on the procedures and unfortunately, she won't be back in the office until Monday and we may need to make an appointment for him to get checked out. That may be cutting things a bit close. Assuming that Gavin's IVIG infusion medication shows up this week, he should be…

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July 10, 2018

Day Trips / Family Time / My thoughts

This 1 single decision, turned our entire day around for the better

On multiple levels, it's been an absolutely exhausting day. I found myself dealing with a great deal of frustration all morning. I spent hours on the phone trying to get Gavin's IVIG infusion medication situation resolved and it seems like it's been resolved. See: We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason By the time I got through all that stuff, I was heading down a path of anger and I really didn't want to go there. Getting everything resolved was a very good thing but it's been an exhausting, scary and frustrating process. It just all came to a head this morning and I became angry because Gavin had to go through all of this.…

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July 10, 2018

Autism Parenting Advice / Day Trips / Family Fun / My thoughts

It’s a bad day but this is how we’re going to move forward

I'm desperately trying to change the course of our day for the better. The boys want to go back to Quail Hollow and go hiking today. I don't exactly feel up to doing that and I know Lizze is still a bit under the weather. Having said that, it's a very positive activity and it gets them away from their tablets. They may take them with us for the sole purpose of taking pictures, and I'm okay with that. If we do end up going, I think we'll take Ruby with us. She'd have a great time and that's something we couldn't easily do with Maggie. She was way too big to load in the car and people don't always react well to pits. This will help to make a…

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July 9, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason

I've just spent the last three hours on the phone, bouncing between Gavin's doctor, the specialty pharmacy and insurance. I swear to God, if I had hair, it would be all over the floor right now. After three fricking frustrating and grueling weeks, we've finally gotten to the bottom of why Gavin's infusion medications are still not available. I'm going to skip the nightmarish phone calls and the fact that Gavin's doctor and her entire office is gone for the whole week, without an on call person, according to the answering service. Instead, I'm going to simply explain what caused this giant cluster fuck and it is/was a giant cluster fuck. I just got off the phone after speaking to a very determined person with Gavin's insurance provider.. We couldn't…

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July 9, 2018

My thoughts

My #1 hope for this week

In a continued effort to remain positive in an otherwise less than positive situation, I thought I would approach this post a little differently. Rather than focus on what hasn't happened, I'm going to focus on what I hope to see happen. Maybe this is semantics but I feel like it's a more positive take and I'm going to roll with it. There are a couple of things I hope will happen this week. Generally speaking, I'd like to find inexpensive ways to keep my family active, and exploring what Mother Nature has to offer. I'm really pushing for a healthier lifestyle and trying to do that with our current set of limitations, can prove to be tricky but not impossible. My number one hope for this we is that…

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July 9, 2018

Inspirational Posts / My thoughts

How a tiny brown bat helped me teach my kids a valuable life lesson

We had a pretty good day in our little corner of the world. The boys went to a cookout with Lizze's parents, Lizze rested because of a really bad migraine and I hung out with Gavin. This whole thing with Gavin sucks but we're making the best of it. In an effort to make Gavin's situation suck a little less, I put together a pizza and movie night for the family. We watched Ready Player One and had Marcos Pizza. The movie was probably among the best I've ever seen. The kids loved it and can't wait to watch it again. We had a nice quiet evening at home and made the best the situation in which we find ourselves. You always need to try and make the best of…

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July 9, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 2

In Part 2 of Talking with a Schizophrenic, Gavin details his latest mission to save the timeline from his evil self. It's very important to understand that this is not an issue of an overactive imagination. If you missed Part 1, you can find that here. In Gavin's mind, these things are actually happening and they are very real. He does his best to recount his actions but struggles with memory recall. He's very proud of these missions, wants to share them and truly believes he's saved the Universe. We don't feed the delusions but we don't challenge them either. Our job is to listen when he wants to talk because as long as he's comfortable telling us these things, we have a much better understanding of where he is…

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July 8, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

The #1 thing all #Autism Parents worry about and it’s not what you think

Over the last decade, I've put a great deal of focus on the fact that all people touch by Autism are unique and not cookie cutter copies of each other. I also stressed the same applies to Autism families as well because no two are exactly the same. Both of these statements are true and sadly, too many people still don't grasp this concept. Stereotypes and assumptions still abound when it comes to anything Autism related. This post isn't about reiterating the same old facts all over again. Instead, this post is about the number the one worry that all Autism parents share. Aside from loving our kids with Autism unconditionally and without limits, this is one thing that in my experience is absolutely universal. One might assume that we…

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July 8, 2018