I feel like this is a total victory

Gavin's appointment at the always amazing Akron Children's Hospital went very well. Most of his gastro symptoms have subsided, and he does not require regular medication in that area of his life. While he's not really gaining weight, he's maintaining where he is, and that's a good thing. His doctor is happy with his progress in the weight department. Gavin spoke up a few times, but it didn't cause any confusion during the appointment. Sometimes it does because of Gavin wanting to say what he thinks the other person wants to hear. Accuracy is not his thing and makes things more confusing than it has to be. He did an excellent job today. He doesn't even have to come back for 12 months. After that appointment, if all is well,…

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Guess where we are today

We've made it to see our friends at Akron Children's Hospital, and did so on time. That's quite an accomplishment if you've driven through Akron in recent years. Anyway, this is a follow-up with Gastroenterology for Mr. Gavin. I don't expect anything Earth-shattering to occur today. Gavin's in a pretty good mood, and he's having a decent day thus far. He's a bit animated though. I guess manic would be a better or more accurate word to use, but it's not mania how he's historically experienced mania. He's just really happy, very exaggerated in much of what he does, and is extremely talkative. It's not bad, at least comparatively speaking but it's enough that we can tell something is going on. I do suspect it will be a bit annoying…

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We had a scary afternoon

It's been an eventful and sometimes even scary day. We survived it, though, and everyone is doing well. First of all, my Grandmother scared us a bit today. Her blood pressure crashed this afternoon, and she had to be placed on an IV for a small fluid bolus. That only lasted about 25 minutes because she's in advanced heart failure, and fluids aren't her friend. She's doing better, and that's quite a relief. It was scary, though because her pressure was dangerously low and based on her wishes, heroic or life-saving measures will not be taken. If you could keep her in the thoughts and prayers, that would be greatly appreciated. By the time I got home, Lizze had made arrangements for the boys to spend the night at her…

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The impulsivity alone is exhausting

There were some frustrating points in our day today, especially in regards to Gavin's IVIG infusion. He was supposed to do the infusion on Friday, but we were seeing a movie that morning, and he decided that he wanted to do it Saturday instead. No harm no foul. We figured we'd let him make that decision because he was handling it responsibly, and that's something we want to foster. When it came time to do his infusion, however, he was very nervous and not super cooperative as a result. He was very loud and demanding. He didn't mean anything by it, but that doesn't make it less frustrating in the moment. It's not always easy to remember that while he's almost 20 years old on the outside, he's only about…

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Sometimes life sucks and you have to make the best of it

It's been a relatively quiet day. I'm currently waiting to hear from my Dad so that I can meet him at my Grandma's nursing home. He and my uncle went to retrieve some things that should help my Grandma feel more comfortable where she is. We were supposed to go last weekend, but it was postponed until today. While I was unavailable to make the trip this time, I will be helping them once they get back to Canton. My Grandma's not doing very well, both physically and mentally. We're hoping to make the rest of her life as comfortable and familiar as possible. There's zero chance of her returning home, and the kind of care she requires is not suited for life outside of a managed care environment. This…

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One of my #Autistic kids took off running while we were out

The first day of summer break proved to be a mixed bag. We went to our movie and then I needed to go grocery shopping. I had to go to two different stores and spent entirely too much, but it was desperately needed. Everyone was pretty overstimulated after the movie. Godzilla: King of Monsters was absolutely amazing, but it was not sensory friendly. Lizze was probably impacted the most, but Elliott and Emmett weren't too far behind. As the day wore on, things got to be a little chaotic, and I thought that getting them some exercise would be helpful. Unfortunately, that didn't go as planned. Elliott and Emmett got into it while we were walking and Elliott ended up taking off. He was out of sight at times, and…

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Our plans for the first day of Summer break

It's officially the first day of summer break. I mentioned the other day that we wanted to surprise the kids with tickets to see Godzilla: King of Monsters. They've wanted to see this for a long time, and we were able to make that happen for them. 😀 We just arrived home, and everyone has gone to their respective corners. The movie was amazing, but it was not sensory friendly at all. Even Lizze struggled with this one. At the moment, everyone is trying to decompress from all that input. I'm hoping that some downtime helps those of us who are a bit overwhelmed right now. I still need to go grocery shopping today. We're in desperate need of supplies, and while it's going to be an expensive trip, it's…

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It’s the final day of the school year

The boys are off to their final day of school for this current school year. They have mixed emotions about today, but they are excited to begin the summer. We're going to celebrate the first day of summer break by seeing the new Godzilla: King of Monsters movie in the morning. They've been waiting for this since it was announced and asked if we could see it. I thought that it would be a great way to start the summer. Between now and then, I don't really have much planned. It's been a relatively slow week and I'm okay with that. We'll visit my grandma and I'll go walking but that's about it. There are a ton of reviews I'm working on right now and I'd like to get some…

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