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Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn't arrive until late and then he ended up in the hospital.…

I have GOOD news and BAD news

I'm going to start with the good news first because I feel pretty good about the good news. ☺ We celebrated Gavin's birthday today and I think he really enjoyed…

I wish he could just be a kid

Gavin and I waited outside the school as we do every single day. Gavin was lost in his game and I was anxiously awaiting the doors to open so I…

Writing with tear filled eyes

Gavin's having a very rough day. On a good day, he's not running on all cylinders but anymore, it seems like his engine is barely turning over. He's not problem-solving…

I’m not f*cking perfect and never claimed to be

This started out as a reply to a supportive comment left on the previous post: A Massive, Overdue and Heartbreaking Update but took on a life of its own and…

I crawled out of bed after 3 hours of sleep

After about three hours or so of restless sleep, I crawled out of bed and hit the track. I missed yesterday, and if I wanted to get this done, it…

The hallucinations may be getting worse

Gavin's becoming more and more involved in his imaginary worlds. I don't know if he's having more hallucinations or if he's more vocal about them. We don't know what's what…

Gavin’s behavioral problems will ultimately be the end of us getting a night off

Lizze and I are knee deep in the first break we've had in about a month. Gavin and the boys are at their grandparents for the night. What typically happens…