Gavin hit a major milestone on his journey to independence

Today, I'm thrilled to share a milestone achievement in my autistic son, Gavin's journey toward independence—a journey marked by resilience and quiet strength. At 24 years old, Gavin faces challenges that many of us can barely fathom. Diagnosed with Common Variable Immune Deficiency (CVID), his immune system is severely compromised, which means he's highly susceptible to infections that his body struggles to fight off. To manage this condition, Gavin has adopted a rigorous medical routine that involves self-administering a crucial medication through two small needles directly into his abdomen, not once, but twice every week. The procedure itself is daunting and time-consuming, at times taking several hours each session. It's a testament to Gavin's fortitude that he has managed these infusions on his own for many years, enduring the discomfort…

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We got some insanely good news

I wanted to drop you a quick line to share a bit of insanely good news. Let's be honest, it's been a little while since I've had some really good news to share. Well, you can reset that counter because I have some good news to share. ☺ Yesterday morning or early afternoon, I got a call from Akron Children's Home Health. They were able to secure a month's worth of Gavin's IVIG Infusion medication. It's a bit different this month though. Rather than using two vials for his infusion, he'll need to use three. It's the same medication but in a different concentration. It's not a huge deal and an easy trade-off. Not only did they secure the medication, they even got it delivered the same day. Gavin was…

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The doctor called with heartbreaking news

I received a call today from Gavin's doctor. When I saw who it was, my stomach knotted up and my heart sank. They never call unless it's bad news. I was right. Apparently, Gavin's numbers are crashing again. I'm currently waiting for him to come out from having his labs drawn for the second time in three days. I didn't get all the numbers but they informed me that his Absolute Neutrophil count (ANC) dropped from 2.9 to 1.8 in less than a week. This is not a good thing and I wish I knew what was responsible for this but no one knows for sure what it is. The most likely culprit is the Clozapine but it's also possible it's part of his CVID (Common Variable Immunodeficiency) as well.…

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