#Autism parenting is all about progress not perfection

It's not a huge surprise that Gavin's appointment with his immunologist went well. These appointments rarely go poorly because he's monitored so closely on a weekly basis. Gavin sees his immunologist because he has Common Variable Immunodeficiency or CVID, which put simply, means he lives with a severely compromised immune system. This is a life threatening condition that has no cure. In order to stay healthy, he requires IVIG infusions twice a week and we do those at home. Today's appointment is a follow up. We have to physically check in about every six months and have special labs run. That assumes there aren't any problems between appointment. Anyway, everything went pretty well and Gavin was even able to answer most of the questions on his own. I only spoke…

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We’ve made it to immunology

Gavin and I made it to his appointment. We actually arrived thirty minutes early because there was absolutely zero traffic issues. That almost never happens. Usually, we leave early enough to allow ninety minutes for travel time. Today it only took about an hour because there was simply no stop and go traffic. Who'd of thunk it? Anyway, Lizze is home with the boys and hopefully Gavin and I will be on our way home before too long. I have a couple of stops along the way but we should be back in the early afternoon.


Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn't wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn't going well. It's been about an hour, and I just got Gavin calmed down enough to try working with him on his infusion. Gavin was so angry that frankly, he wasn't safe to be around. Angry is probably the wrong word. He wasn't angry at anyone. I think he was so frustrated with the infusions continuing to leak; he was beyond what he could cope with. I'm glad the kids weren't home because they would have been terrified by his behavior. Gavin was screaming as loud…


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. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn't want to put the extra stress on his body. Missing one infusion isn't a huge deal. It's not something we want to do for shits and giggles, but considering the circumstances, it was for the best. I have to call Akron Children's Hospital today because we need to order longer subcutaneous needles for his infusions. His doctor wants to try one size longer to help address the issue of his infusion leaking, requiring frequent resticks. Gavin's…


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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