Gavin Archives - Page 31 of 113

The doctor called and I learned something very interesting

Gavin's awesome immunogist just called and wanted to know what was going on. I explained what I was told by the pharmacy and she was frustrated by it as well. Neither of us are sure what's going on and why there's such a delay. She's going to get to the bottom of this, one way or another. I also learned something very interesting. When I asked her about running Gavin's labs to see where he was at, she explained that when we do that, he has to be off of his infusions for three months. I wasn't able to really ask why three months? What that tells me is that if we can go three months in order to test his levels or see how he does on a break,…

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July 6, 2018

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

Even if we’re overreacting, I can live with that

Until we're given other instructions, we will not be taking Gavin anywhere there are crowds of people. I've left messages once again today in regards to Gavin's IVIG infusion medication and I'm waiting to hear back. At this point in time, and in the absence of definitive information one way or the other, we're going to assume that Gavin is at risk. That's simply the safest approach we can take at this time. Currently, Gavin's feeling okay and on the off chance we're overreacting, I can live with that. What I can't live with is not taking this seriously and having something happen.

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / Inspirational Posts / My thoughts

The #1 reason I’m so angry tonight

I'm trying to do many things right now and one of them is fight off my anger. I think one of the reasons I do as well as I do under all this constant stress is that I don't get angry. I really don't get angry, and if I do, I don't hold onto the anger. Being angry is like drinking poison and expecting it to effect someone else. It's destructive and has little place in my life. Having said that, I'm fucking angry right now. We've been dealing with this GAMMAGARD shortage for over three weeks and Gavin's last IVIG infusion was on June 18th. Today marks the fifth IVIG infusion in a row that he's missed because we can't get his fucking medication. Gavin has Common Variable Immunodeficiency…

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July 6, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 1

In this video, I listen to my son with both Autism and Schizophrenia, tell me about a mission he must go on to save the universe. This is typically the nature of his Schizophrenic hallucinations. This is NOT his imagination. This is how Schizophrenia impacts his life. The purpose of this video is to educate, provide insight and destigmatize mental illness. It's important that I be supportive without playing into his hallucinations. It's a very fine balance. We never challenge his hallucinations because that could prove to be potentially dangerous to us and harmful to him. When you're done, Part 2 can be found here. Be sure to SUBSCRIBE for the latest updates and educational videos release on my YouTube Channel. https://youtu.be/OV6k-s0I71Y

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July 5, 2018

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

There are 14 reasons why I can’t stop worrying right now

I've spent the morning on the phone, trying to get ahold of the pharmacy responsible for delivering Gavin's IVIG infusion supplies. I'm not content waiting to find out when his medication will arrive. This is too important to let happen on its own time frame. After a few attempts, I finally got to speak with a person at the pharmacy a little bit ago. As usual, they were very nice and seemed to be equally frustrated that we don't have Gavin's medications yet. This person went over what was going on and it's safe to say that anything that could possibly go wrong, has and continues to go wrong. Let's just review what's happened so far. There is what appears to be a manufactured (purposeful} nationwide shortage of GAMMAGARD. Immunology…

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July 3, 2018

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

This is life threatening and he needs his treatment

It's now Tuesday, July 3rd and it's been three weeks since we first learned about the nationwide shortage of GAMMAGARD. Gavin recieves at home IVIG every Monday and Friday for treatment of Common Variable Immunodeficiency (CVID). His immune system is severely compromised and this medicine gives him a temporary immune system. It's not permanent and it burns off rather quickly. These infusions are done twice a week in order to keep his levels up and his body fighting off illness or disease. Gavin has now missed four infusions in a row and while we're told not to panic, I can't help but feel this overwhelming sense of urgency to get this resolved. We're currently waiting on his new medication to be dispensed. Everything has been approved and the medical supply…

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July 3, 2018

Autism Parenting Heartbreak / Emmett John / Gavin / My thoughts

The heartbreaking talk I had with my youngest

I always try to live my life without making any assumptions, at least big ones. No matter how hard I try, I inevitably find that I've made assumptions without even realizing it. I ran into one such time over the weekend. On one of our many trips to Home Depot, while trying to fix our kitchen sink, a subject came up and resulted in a heartbreaking conversation with Emmett. I'm not sure what we were talking about but I stopped off at a gas station because we needed gas. I asked Emmett if he wanted to learn to pump gas. Always eager to learn new things, he jumped at the opportunity. I closely monitored him but he did really well and we were soon on our way to pick up…

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July 2, 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