GAMMAGARD Archives - Page 4 of 94

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

Gavin / My thoughts

The single biggest reason I’m worried about our emergency psych appointment today

Lizze and I reached out to Gavin's psychiatrist's office because we're growing increasingly worried about his worsening level of lethargy. I mentioned eariler that they were our first stop because if this is medication related, it's probably the Clozapine. Since they manage the Clozapine, it makes sense to begin there. My email was returned within minutes and we got an appointment right away. I'm not sure if that's just convenient or both convenient and scary. It's impossible to get into Gavin's doctor and we literally received an appointment for the same day, scheduled for about an hour after I sent the email. I don't think there's anything medically significant to worry about there is still one reason to be very concerned. We could end up having to either cut back…

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June 19, 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

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

We have some difficult decisions about Gavin’s heath to make today

It was a rough night and a challenging morning. It's a big day and it's made worse by my lack of sleep. That being said, we've made it to our appointment with Gavin's immunologist. We actually made it about 20 minutes early as well. Traffic was much kinder to us than I had anticipated. Now we have some very, very difficult decisions to make about the future of Gavin's health.

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June 18, 2018

Autism Parenting Insight / Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

There’s only 1 thing that could make things worse and it just happened

I have been sharing how stressed out and worried I am over Gavin's current immunological crisis. I consider it a crisis because there is a nationwide shortage of GAMMAGARD. This medication literally replaces his broken immune system and keeps him from getting sick or worse. Until we resolve the issue and solidify a working plan for moving forward, I consider this a potential life threat and therefore a crisis. The only thing that could make this particular situation worse is if Gavin were currently sick. Unfortunately, that has come to pass because Gavin is currently sick with whatever Emmett and Elliott have been fighting off. We're probably looking at a simple cold but when your child has a severely compromised immune system, only one dose of GAMMAGARD left and no…

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June 16, 2018

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

1 phone call has sent me into a complete panic

I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…

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June 13, 2018