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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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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Documenting Your Family Life Can Be A Real Adventure

This is a contributed post and therefore may not reflect the views of this blog or its author.  If you learn anything from this blog, it should be how families are absolutely nothing without love, and despite the challenges that might be present in your personal home situation you can always overcome them, or at least manage them. To do this will require a burning love, but thankfully this fire sustains itself from the challenge and connection, rather than fading to cinders. To achieve this will, of course, require your diligent effort. It does not happen accidentally. Pexels There are many methods to help you continually put forth effort and love into your family unit. Presence is one. Communication is another. Understanding and willingness to overcome hardship are perhaps the…

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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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Taking a project with my #Autistic son today

The insanely hot weather has defeated us again today. We were going to go hiking but it's simply too hot and we'd be inviting trouble. Instead, Emmett and I are going to take on a little plumbing project that needs to be done. Yesterday, Gavin accidentally clogged our broken garbage disposal. It hasn't worked in a very long time but we only ever have running water to that side of the sink, at least that's all it supposed to have. I never removed it because it just wasn't a priority and we were hoping to actually replace it. Gavin dumped food down there yesterday and it's now clogged. It takes hours for water to drain now and there's no point in trying to tear it apart in order to unclog…

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Hiking at @StarkParks Sippo Lake with our #Autistic kids

I'm way behind on this particular post because it's been a long week. That being said, I wanted to share pictures from our hike at Stark Parks Sippo Lake. We planned this day trip the night before and it was only about a twenty-minute drive from our house. This particular hike was a bit less aggressive than our previous hike at Quail Hollow a few days prior. The path took us on about a 1.8 mile journey through lightly wooded and marshy areas. While we prefer the more off the beaten path kinda trails, this was still absolutely beautiful. The boys struggled with this one more than they did at Quail Hollow and that hike was over a mile longer. I think the problem was the crushed limestone path. The…

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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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