Gavin had a bad reaction to his IVIG infusion tonight because apparently, life isn’t challenging enough already 

As you know, Gavin receives IVIG infusions twice a week because he's living with a severely compromised immune system. The actual medication is called GAMMAGARD and it's basically made up of antibodies from many, many different donors. This replaces the defunct antibodies in Gavin's body, for a short period of time. He's been receiving these infusions for many years now and will continue for the rest of his life. Now we're all caught up and everyone is on the same page. Gavin received his IVIG infusion tonight and the infusion itself went well. The actual infusions themselves usually go well.  Sometimes we hit some snags but that's really the exception to the rule. What happened tonight was a bad reaction. It happens on occasion but it hasn't happened in a…

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It’s been a rough day and this is all I have for now

I'm really sorry that I haven't written much of anything today.  I've been way to wrapped up in trying to survive the day, that writing about anything just wasn't going to happen.   Personally, I'm struggling a bit and can't seem to get my footing right now.   Gavin's a mess.  He's seriously struggling and Dr. Pattie saw that for herself tonight during therapy. Gavin had the first aggressive and self-injurious meltdown he's had in a really long time.   We had to move him away from his brothers and sit him on the floor.  I will say that he did get himself under control and I'm really proud of him for that.  He worked through it but it's just more evidence that something is wrong. Gavin hits these cycles…

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I’m exhausted, scared and overwhelmed 

It's been a trying day from start to finish.  We had victories and moments of sheer terror today. I'm going to skip the part where Gavin wandered off and ended up lost for short time that seemed like forever because you can read that here. I wrote a post about that earlier and frankly, I don't have the energy to rehash it right now.  Just check out the link if you want to catch up on that. While we were getting everyone ready for the out of town trip to the dentist, I told Gavin that I wanted to trim his sideburns.  They were getting kinda scraggly and needed touched up. He told me that he wanted to do them himself, using the new razor he got for Christmas last year.…

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My oldest with #Autism wandered off today and we couldn’t find him

Before I go any further, let me say that Gavin is safe. We were on our way to the dentist and Gavin started having bladder issues again. We had something that needed replace under warranty at Best Buy, so we opted to do that on the way out of town because Gavin needed the bathroom anyway. This has happened a million times before and this is what usually happens. I'll go do whatever needs done at customer service and Gavin goes straight to the bathroom. He knows exactly where it is and he's gone a few minutes before returning to my side. We worked up to this over a period of time and lots of practice.  There's never been an issue until today. I finished up at customer service and…

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The week of craziness begins today with another trip back to the dentist 

We are back in Fairlawn today.  This time it's for Elliott and Gavin's dental check up.  It's just a routine checkup and shouldn't be a big deal.   Elliott's a bundle of nerves and smothered in anxiety.   He's knows he's going tomorrow but he's not happy about it.  Frankly, he's doing much better than I was prepared for at this point.  He's not freaking out and that's a big step forward.   I know he's nervous and we'll probably see a lot more of that nervousness, rear up as we get closer to his appointment but I'm really proud of him for being as calm as he's been so far.   Gavin on the other hand, couldn't care less about going to the dentist. This kid has been through…

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I fear Gavin’s starting to lose it and that’s not good

I wanted to talk about how Gavin is doing. Lizze and I have been talking about this today and we both agree that Gavin's not doing well. For starters, he's forgetting a great more than is typical for him. Things he would normally do really well, he's unable to complete. His threshold for frustration is very, very low as well. He's debriefed us on a few missions over the last few days and while he's definitely still in a psychotic break or episode, it's his dreams that are beginning to worry me. His dreams are centered around death or dying. The other night, he had a nightmare that my Mom died.  She died because someone had stabbed her in the throat with a pitch fork.  Gavin says that he woke…

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Here’s the good news

There's many times that what I have to share is a good news/bad news kinda thing.  Today is no different I figured I'd start with the good news first and save the bad news for later because why not.  Gavin and I made a run to the grocery store yesterday afternoon.  We ended up going to Walmart after filling our water jugs.  Money's tight and we're behind on the mortgage and we already know that the gas was shut off two days ago.  Despite these things being important and I hate falling behind, we have to eat.   Gavin and I headed to Walmart with a very limited budget and we were able to do pretty well. I tried to focus on things that were on the short list of…

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I’m way too petered out to be doing this today

I'm feeling pretty petered out today. The appointment this morning with Emmett and then being up really late with Gavin, has just killed me.   In a little bit, I'm going to have to run to the grocery store because I'm assuming we're all going to want to eat dinner tonight.  If I don't go, I'm not sure that will be possible..  lol Gavin will probably want to go with me and I totally appreciate his wanting to help but I'm not sure I'll be able to deal with his nonstop talking. I'm definitely not up to talking a out his tablet let games right now.   That being said, I want to encourage his desire to help out and learn more about interacting with society because that will only…

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