Common Variable Immunodeficiency Archives - Page 168 of 260

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

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

Gavin / My thoughts / Updates

2 very important, but slightly delayed updates

I meant to share this eariler but frankly, it still isn't finalized and nothing has actually changed yet. That said, I finally heard back from Gavin's immunologist about the issues with his GAMMAGARD. They hadn't reached out because they were still trying to get everything approved. The got everything approved but insurance screwed up and approved the wrong pharmacy. You can't get these things at just any pharmacy. The pharmacy has to agree to certain terms and there's a lot of red tape. Approving the wrong pharmacy doesn't do us any good because everything is at our pharmacy. I don't know if that makes sense. Basically, insurance made a mistake and the doctor has not be able to reach them to get it fixed. Calls aren't being returned, at least…

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June 27, 2018

Emmett John / Happy Birthday / My thoughts

My youngest just hit double digits

Our day was fairly nonstop and I didn't get a chance to post this eariler. Better late than never. Emmett turned 10 years old today and he had a great birthday. We try to plan far enough in advance that we can pull things off. Anyway, Emmett is obsessed with Nerf Guns and he got what he calls the ultimate Nerf Gun today. Apparently, we did good. We had a busy but mostly low key day. We decided to celebrate his birthday in the early afternoon. It was pretty simple but it made him happy and that always feels good. We had ice cream cake before he opened his birthday presents. There were a few appointments this afternoon but we were done about dinner time. I cooked a couple pizzas…

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June 27, 2018

Autism Parenting Insight / My thoughts

The countless reasons why my life as an #Autism Dad is so hard

As Autism parents, we all live in different worlds because Autism impacts our lives in very different ways. Some people have it pretty good and life is manageable, while others literally struggle to make it through each day. Many others fall somewhere in the middle. I fall into the category of struggling to make it through each day. I can't remember a day where I would sit back and say to myself, it was a really easy day today. In my life, easy days don't exist. I have an eighteen-year-old with the capacity of a five or six year old and that's anything but easy. Life isn't meant to be easy for anyone. If things are too easy, we can become complacent, and perhaps take things for granted. When things…

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June 26, 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

My thoughts

We keep trying and that has to count for something, right?

So far, this is summer break has been pretty decent. We've been trying to spend as much time outside of the house as possible and because we can't spend that time in our yard, we have to find places to go. Money's tight but we're finding things to do that are either super cheap or even free. Last Friday, we took the kids to see Jurassic World: Fallen Kingdom as a surprise for Emmett's birthday, which is actually tomorrow (6/26/2008). It was a really awesome time and everyone had fun, especially Emmett. Lizze and I were so happy to be able to do this for both him and his brothers. ☺ We've spent a lot of time out at our local parks and we're trying to go walking every evening.…

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June 25, 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