The big reason I’m really frustrated with Gavin right now

I'm going to make this quick because I need to go to bed. The big reason I'm really frustrated with Gavin right now is very simple but also extremely complicated, all at the same time. Ever since Gavin began going on missions as a result of his Schizophrenic hallucinations, there have only been a couple rules that really matter. The first rule is that his missions only take place on the other side of the portal. The portal is what he refers to his bedroom door as. This keeps them mostly contained to his bedroom and limits the chances of them spilling out everywhere else. This has been mostly successful at both keeping him physically safe and shielding the boys from his missions. The second rule was that he never…

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We received confusing results from Gavin’s surgery and I have 4 questions that need answered

We received some confusing information regarding the results of Gavin's endoscopy and colonoscopy that took place last Friday. I received a phone call explaining that for the most part, his results were good. He does have what the nurse called mild gastritis but there wasn't an explanation for it. We knew all of this already because the doctor who performed the procedures explained everything at the time. What we are waiting for was the results of the biopsies and a plan for moving forward. The nurse on the phone was very nice and explained that we could keep him on the Nexium, which was confusing because he hasn't been in Nexium in at least eight years. I explained that and the nurse needed to check with the doctor in order…

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Emotionally absorbing another heartbreaking struggle, it must be Monday

As with every Monday and Friday for so many years now, Gavin needed his IVIG infusion this morning. Once again, Gavin put the supplies together in order to receive what essentially amounts to an antibody transfusion. This is only necessary because his body is unable to produce the necessary immunoglobulins needed to fight off infection. In other words, his immune system is severely compromised. This morning was no different than all of his more recent IVIG infusions. He struggled to put things together properly. He's been struggling to draw up the medication, without wasting a good amount of it and spent a large amount of time freaking out over the entire process. He's been struggling more as time goes by. There was an interruption in his infusions for two and…

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Here’s how Gavin’s surgery went at @AkronChildrens Hospital today

Unfortunately, I'm not feeling very well tonight and I think it's my body turning on me because of all the stress. I'm going to make this super quick because there isn't a great deal of information to share for another week or so. As I said eariler, Gavin's surgery went well. The staff at Akron Children's Hospital are second to none and we are so grateful for how well they treated Gavin. The entire procedure was about thirty minutes and it went smoothly, without any complications. Gavin did well under anesthesia and that was something we were a hit concerned about because of his autonomic disorder. When the doctor met with us after, she explained that almost everything looks great. They only problem they found was in his stomach. There…

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A quick update because just got home

We just arrived home. Everything went as well as expected. I'll explain what they found a little bit later on. Right now I'm going to be bed. Gavin is taking a nap and sleeping off the rest of the anesthesia. I appreciate all the support we've been shown in the last say or so as we prepped for today. Thank you very much.. ☺ I'll be back after I get some sleep.

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We have arrived at @AkronChildrens for Gavin’s surgery

We've made it and made it early, thrifty minutes early to be exact. We had anticipated construction but it didn't occur to me that we would be driving through before the workers started for the day. Anyway, we're here, checked in and waiting for a room. I appreciate all the thoughts and prayers that have been coming in all night. This should be fairly quick and painless. Let me tell you how much I don't want to be awake right now. 😉 Zzzzzzz

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Please keep Gavin in your thoughts and prayers

Everything is a go and I'm off to bed cause we have to be up and moving around 4 AM. I'm not looking forward to that at all but I'm grateful it's actually happening that early because Gavin won't have to go without eating any longer than he has to. In theory, and barring any problems, we should be on our way home by lunch time. I don't know if we're picking the kids up on the way home or if we're going to be able to sleep for a bit first. I know that all Gavin cares about is getting a burger on the way home. ☺ Speaking of Gavin, he's very nervous about the procedures. That's a bit unexpected because he was fine the last time. He was…

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Gavin’s scheduled for surgery tomorrow but did we get everything worked out?

I need to get you all caught up on Gavin's status and whether or not his scheduled surgery is a go for tomorrow. I couldn't really share anything until this afternoon because I didn't get the final word until a few hours ago. There are three things that needed to be addressed before we could move forward with his surgery. So we're on the same page, Gavin is scheduled for a colonoscopy and endoscopy. The doctors refer to it as surgery, I assume that's because of the biopsies but regardless, I'm keeping consistent with what terms his doctors and the hospital are using. I should mention that part of the complication with this whole thing is Gavin's overall health. As a result, he can't have the procedures done the way…

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