Read more about the article This is life threatening and he needs his treatment
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
Read more about the article The heartbreaking talk I had with my youngest
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
Read more about the article All I wanted to do was fix the sink and this happened
Emmett John / My Projects / My thoughts

All I wanted to do was fix the sink and this happened

It's been a really long and frustrating day. We were disappointed that we had to postpone our hike due to high temperatures but it is what it is. Instead, Emmett and I took on what was supposed to be a simple project and it turned out to be anything but. I'll try and sum it up a quickly as I can because I'm exhausted and hoping to actually fall asleep tonight. We had to remove an old, broken garbage disposal and convert the sink about to a standard drain. That was a relatively simple task aside from nothing coming apart the way it was supposed to because whoever installed it, screwed all the connections together and decided that wasn't enough. They opted to then cover everything with what appears to…

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July 2, 2018
Read more about the article The main reason we’re sticking to the indoors today
My thoughts

The main reason we’re sticking to the indoors today

We're going to be keeping ourselves indoors today, at least for the most part. We did pretty good this week in regards to getting outside. Lizze and I took the boys hiking twice and walking a few times in between. The hikes were decent hikes and had us tracking at least two miles, through the woods or wetlands. I wrote about the first hike here but still have to write about our second trip. Anyway, the temperature is supposed to be approaching 100°F, with a dangerously high heat index today. Last I looked, there were still high heat warnings issued. I figured it best we stick to the indoors today. One of the things that I want to do is work on the house and get things caught up a…

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June 30, 2018
Read more about the article I actually fell asleep last night for the first time in weeks
My thoughts

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
Read more about the article The Good News – The Bad News – The MASSIVE Meltdown
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
Read more about the article He’s almost missed 3 in a row and I’m worried
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