Here’s an important, decent size Gavin update

I've made some pretty significant progress in regards to figuring out all the Gavin related things I set out to find the answer to this afternoon. There are still a few things I'm waiting on return calls for. I'll start with what I learned today. I was able to speak with the Cleveland Clinic about Gavin's EEG from last week. The reason we hadn't heard back is because his doctor is out of town until later in the month. They were able to have another neurologist look at the results and I'm pleased to say that Gavin didn't have any seizures during the 23 minute test. I'm not sure how much better I feel because it was only 23 minutes but at least it went well. While he didn't have…

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I have to be a phone ninja this afternoon

The game plan for the rest of the day is phone calls. I need to get the results of Gavin's EEG and find out why his new IVIG Infusion Pump didn't show up last week. Unfortunately, after getting home from the appointments this morning, I crashed for a couple hours. I was up with Elliott until well after 3 AM. Elliott however, never fell asleep himself but took a nap this morning. I'm off to a later start now but it shouldn't prevent me from collecting the information I need in regards to Gavin's Immunodeficiency and Epilepsy concerns. I just need to be a phone ninja and get it all done.

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The roads were horrible but we made it

Well it's quite obvious why school was canceled today. The roads are complete shit and we had a very difficult time simply breaking through the ice to get inside the car. We did safely make it to his appointment and everything went well. The only thing worth mentioning is that we go back in 30 days to do the paperwork required to maintain guardianship over Gavin after his 18th this month. I'll talk more about that later. Now we're off to get his bloodwork done.

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This morning will be completely focused on Gavin’s needs

We have quite a bit going on this week and it all begins on Monday. After we get the boys off to school, I have to take Lizze and Gavin for bloodwork. Lizze's labs are routine in nature and Gavin's are so we can get his next refill of Clozapine on Wednesday. I guess it's sorta routine but it's much different in nature than Lizze's. Anyway, after that, Gavin has an appointment with his psychiatrist. This is for the sole purpose of seeing how a Gavin's labs have been and if we can safely continue the Clozapine. I'm not expecting anything unexpected because if his labs were bad, we'd already know about it. After we finish up with that, Lizze has to go to the mall and get her wedding…

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#Autism and #Legos: Gavin’s latest Creation

Gavin's been on a Lego kick recently. He's always loved Legos as he regresses, he has sorta gotten away from them because they were as easy for him to work with anymore. On Saturday afternoon, Gavin spent four hours building this from scratch. This was done completely using his imagination and he was so excited to share the picture with you all. I didn't get around to editing the image and writing the post until after midnight but he must have asked me a dozen times if I'd posted it yet.. ☺ Please take a second and leave him a positive comment below about his masterpiece. I'll be reading them to him later on.

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We had two close calls with Gavin’s meds this week

We've had two pretty significant issues this week, in regards to Gavin's Clozapine and IVIG infusions. I mentioned previously that there was a issue with Gavin's Clozapine refill and that governing body that okays Gavin's refills has decided to make his start over. That means bloodwork every Monday and only seven days worth of pills at a time. Anyway, I had called the pharmacy on Tuesday morning to remind them to pull his lab results because he needed his refill before Wednesday. They assured me that it would be done and delivered that afternoon. Unfortunately, they never showed up and I had to chase them done and make sure it was refilled immediately. They finally refilled it but because it took them so long, they weren't able to deliver it…

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It’s so important to challenge him with things like this

Gavin's been spending too much time playing games on his tablet. Right now he's playing a game that talks about the 7 wonders of the world and Gavin wanted to learn more about them in real life. I suggested that he research one of them each day and write a brief essay about it. I told him that I really wanted to learn about them and he could teach me all about them when he's done researching. He took that and ran with it. Below you will find his essay from today. I'm not quite sure what are his words vs what he copied from the internet. Gavin is very limited cognitively and things like this aren't easy for him. It's really important to encourage him to try anyway because…

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This is what we learned at The Cole Eye Institute today

It's been an exhausting day full of walking, waiting and driving. Gavin's final appointment of the day was at The Cole Eye Institute this afternoon. The appointment went well but it took forever. I honestly felt like we had been forgotten. The good news is that Gavin's eye checked out and they are basically perfect. The bad news is that we still don't know for sure why he's having visual blackouts. The current theory is that these blackouts are caused by migraines. Everything else has been looked at and aside from the pending EEG results, we've eliminated every other possibility. Until we find anything else, we're going with migraines for now. Appointments like these are maddening because all we want are answers and all we end up getting are more…

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