IVIG Archives - Page 4 of 95

I actually fell asleep last night for the first time in weeks

I've been struggling with Insomnia for weeks now. I was simply unable to fall asleep until 4/5/6 AM and then I'd sleep until noon or 1PM, it's incredibly frustrating and I have tried everything, I know to do aside from prescription sleep aides. Anyway, last night I fell asleep about 1 AM and slept for 7 straight hours. I don't remember the last time I did this. I'm feeling pretty good today and I'm so grateful.

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June 30, 2018

Gavin / My thoughts

The Good News – The Bad News – The MASSIVE Meltdown

Let's cut to the chase and get the good news out of the way. I'm really hoping to get back on track, as we make our way through the weekend. I have a great deal on my mind but I feel that things will be getting better. Hope is so fragile but even so, it's incredibly hard to completely snuff out. Just when you feel like all hope is lost, it can find its way back into your life. That's not a bad thing. ☺ There was a door that closed on me today and it sucks. At the same time, as a result of that door closing, another one opened and it feels sorta like a last minute reprieve. What happened doesn't really matter and maybe someday I'll share…

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June 30, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

He’s almost missed 3 in a row and I’m worried

We are very quickly approaching the Gavin hasn't had an IVIG Infusion in over a week time frame and that's making me exceptionally nervous. Since his first infusion all those years ago, he has never gone this long without one. He's never missed three in a row and tomorrow will mark the third missed infusion in a row. I'm going to follow-up today and see if there is anything at all, that I can do to move things along. Realistically there isn't anything I can do but I feel better asking anyway. I'm worried.

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June 28, 2018

Day Trips / Family Fun / Gallery / My thoughts

100 pictures from our amazing hike at @StarkParks Quail Hollow

I've been talking about how we want to make this a good summer for the kids. With a tight, sometimes nonexistent budget, we're limited to local things. Admittedly, I've been very discouraged by our limitations. I've felt demoralized and defeated but I at the same time, I can't give up because that would be letting my family down. Lizze and I have made a conscious decision to focus on what we can do rather than what we can't and that's something I feel good about. ☺ One of the things we can do are day trips. These are close to home but can be fun nonetheless. Today we took the kids to Quail Hollow Park. It used to be a State Park but was given to Stark County awhile back…

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June 26, 2018

Inspirational Posts / My thoughts

The worst thing that 1 #Autism parent can do to another

I've been a voice in the Autism community for almost a decade. People have gravitated to me because I say what they're thinking without them having to say it. I don't judge those with differing opinions and I never force my views on anyone else. I love taking the pulse of the community by publishing polls designed to help people get a better understanding of what others in the community are experiencing. Someone had responded to one of my many polls by telling me that it was an awful question for me to ask. That awful question that was asked was Do you ever miss your life before Autism? Why shame me for asking it or others for answering it? Feel free to answer the poll below. [totalpoll id="46574"] The…

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June 25, 2018

My thoughts

I haven’t written cause I’m not doing so well

It's been a couple days since I've published anything about anything. There are a few reasons for that. The main reason however, is that I'm not doing so well right now. I'm not sleeping and I'm not coping well with anything. I'm overwhelmed by all I have to figure out and there's very little I can do about it. There are bills and major medical worries crushing me. Gavin's still missing medication to replace the GAMMAGARD. They still haven't figured everything out and Monday will mark his second IVIG infusion in a row that he's missed. It's terrifying. The change to his Clozapine hasn't really helped with him sleeping too much during the day. We don't know what to do with that. I'm fighting back but I feel absolutely powerless.…

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June 24, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts / YouTube Video

What the hell is Common Variable Immunodeficiency?

With all the recent talk surrounding Gavin's immunological issues, I thought I would put something together that would help to educate those among us who may not know what CVID is or what it means to be diagnosed with it. Here's a quick 5-minute rundown or what Common Variable Immunodeficiency is and who it impacts Gavin. https://youtu.be/VvuuWe-8QR4

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June 18, 2018

Autism Parenting Struggles / Gavin / My thoughts

Even if we had the power, would it give us the right?

We have a conundrum and aren't sure what the right thing to do is. In less than 24 hours, we return to Akron Children's Hospital for pre-testing and consultation in regards to Gavin's endoscopy and colonoscopy, which is a bit more complicated because of Gavin's health issues. At this point in time, Gavin either doesn't know or doesn't remember that he's having these done in June 5th. When we arrive at Akron Children's Hospital tomorrow for the meeting, we're going to be going over in great detail, all that's going to transpire. Our concern is that Gavin is going to freak out. For an average person, these things can be scary but for an 18 year old with the mind of a 6 year old, it could end up being…

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May 30, 2018