IVIG Infusion Archives - Page 85 of 181

Car trouble is changing the course of our day

We're rescheduling Gavin's appointment at the Cleveland Clinic today. I mentioned last night that we have a warning light popping up in the car. I haven't had a chance to dig into it yet, and it's not worth the risk. Lizze has an early morning appointment today. The only major thing we have left is therapy tonight. I will, of course, be visiting my Grandmother at some point, and I still need to go walking. I have writing to do and some projects to work on. I have an end of the week deadline, and I'm making serious progress. 👍

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June 4, 2019

My thoughts

You won’t believe what happened today or why the police showed up at our door

Today was one of those take the good with the bad kinda days. Gavin's appointment at Akron Children's Hospital went well, and he doesn't need to go back for one year. That assumes he doesn't have any problems between now and then. This is incredibly positive because Gavin has historically gained doctors and not been able to semi-remove them from his life. I have put this firmly in the win column for him. 😀 Lizze was a total trooper. She made sure she went with us to Akron Children's Hospital, even though she was far from feeling up to going. We've had some crazy weather for the last week, and the barometric pressure changes cause her and many others living with fibromyalgia, a tremendous amount of pain. She's not been…

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June 4, 2019

Teenagers are tough, but teenagers with #Autism can be even tougher

My wife and I have about 20 years of Autism parenting experience. Gavin's going to be 20 years old in January, but our journey with him was anything but typical, even for an Autistic kid. The reason I say that is because now that Elliott is a teenager and Emmett's not too far behind, we're finding it a completely different experience than we had with Gavin. In many ways, it's very much like we're going through all of this for the first time because our frame of reference with Gavin not proving to be helpful. Gavin functions at a much lower capacity than the boys, and that presented us with a unique set of challenges. Elliott and Emmett are very high functioning but struggle in many ways that Gavin didn't.…

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June 3, 2019

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts

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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June 3, 2019

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts

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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June 3, 2019

My thoughts

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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June 2, 2019

Autism Parenting Insight / My thoughts

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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June 2, 2019

My thoughts

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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June 1, 2019