Sensory Archives - Page 209 of 471

This morning was all about Gavin

I spent the morning dealing with Gavin related appointments. He had an appointment with Dr. Reynolds and then needed to get his bloodwork done. We had about an hour long wait before we were finally seen by the good doctor. That wasn't too bad of a wait and I wouldn't have cared otherwise but I'm not feeling well this morning. One of the topics discussed was the nightmare it's been to get his Clozapine refilled. Frankly, I don't know who's to blame anymore because the lab points the finger at the pharmacy and the pharmacy points the finger right back at the lab. Dr. Reynolds issued a new STAT bloodwork order and made it very clear that the lab needs to fax the results to the pharmacy immediately. I don't…

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March 12, 2018

I hate feeling powerless

It's now 1:47 AM and Emmett has just now fallen asleep. We've been trying to help him for hours upon hours. He has a really bad tummy ache and feels like he's going to puke. This is stressful for any kid but it's especially so with a kid like Emmett. To make things even worse for the poor kid, he also seems to be hitting a fever flare because he's getting sores in his mouth again. I don't know what the deal is with these tummy aches but they are consistent, especially when school is approaching. He's not making this up and he's clearly in distress but the cause remains a mystery. My personal opinion is that we're dealing with a side effect of his extreme anxiety. He struggles with…

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March 12, 2018

Emmett John / My thoughts

Emmett and I met with the principal this week

Emmett and I met with the principal on Wednesday to begin planning for the rest of the school year and beyond. There's no interest in a PTA, so Lizze and myself will be working directly with the school. Hopefully, others will join at some point but no one showed up on Wednesday. What's really cool is that Emmett and Elliott are involved in this. It helps the have a sense of ownership in the school and learn some behind the scenes stuff. As I mentioned, it was just myself, Emmett and the principal on Wednesday. Lizze was home with Gavin and Elliott because Elliott had come home from school not feeling well. Otherwise, they would have been there as well. One of the things we're working on right now is…

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March 10, 2018

Elliott / My thoughts / Today's Victory

So Proud

I want to take a second and share how proud of Elliott I am right now. I'm always proud of my kids but sometimes they even surprise me and I find myself even more deeply impressed. Today is one such day.. ☺ On the way home from school today, Elliott was upset because he was given homework over the weekend. The whole class was given homework, not just Elliott, but he's still upset. Anyway, without having to be asked, bribed, chased after, fought or otherwise forced, he came home, and began his homework. I'm not sure I've ever seen this from him. I'm absolutely impressed and frankly, quite relieved. I was dreading the homework battle this weekend and now I don't have to worry about it.. ☺ Elliott, I'm super…

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March 9, 2018

Gavin / IVIG Infusion / My thoughts

It was a disastrous morning for Gavin

It's been a really rough morning. I've been fighting off a stomach bug for most of the week and it's not been pleasant. I've actually not been eating much, so might be a great time to weigh myself.. Lol Anyway, Gavin did not have a good morning. His IVIG Infusion pushed him over the edge, down the street and around the corner. He was completely freaking out and there was very little consoling him. He setup his own infusion again and did a great job. He picked new locations to stick the needles but unfortunately, both infusion sites leaked and required re-sticking, which he's not a fan of, like at all. It sucks having to do this once but twice is double the amount of pain and anxiety for him.…

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March 9, 2018

Clothes / Emmett John / My thoughts / Sensory

I’ve spent the morning murdering tags

It's been awhile since I've had to do this but this morning, Emmett began freaking out about the tag in his winter coat. For some reason, after all this time, he's taken notice of it. After the coat, I was then tasked with removing a tiny tag from the bottom of the shirt he was wearing. This tag never made contact with his skin because of where it was placed but I murdered nonetheless. Emmett was in a weird place this morning and that could be why he was so sensitive to the tags that have never been a problem before. We know he's really sensitive to tags in general so we always buy tagless shirts because they seem to be less problematic. Depending on his current mood, he can…

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March 8, 2018

My thoughts / Note to Self

Note to Self….

For about the last twelve hours or so, I've been absolutely miserable, curled up in bed and trying not to puke. I made the mistake of eating some spicy DIGIORNO pizza for dinner. I'm actually getting nauseated just thinking about it again. We'll just say that it didn't agree with me at all. I woke up about 4 AM feeling like my insides were in fire. It sucked and while I'm better now, Lizze had to step up and take over for me today. That's not always easy for her to do, not because she doesn't want to but because of her own health problems. Anyway, all is right with the world again and I'm never going to eat that again. I've removed the extra from the house and while…

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March 7, 2018

Emmett John / My thoughts

Trying to figure out what’s wrong when my son can’t tell us

I never got around to talking about Emmett not going to school yesterday. He was a dealing with a tummy ache on Monday and barely made it through the day. His teachers never called to tell us he wasn't feeling well, even though he needed a trash can next to his chair while he sat with his head down. When it came to going back the next morning, he was still dealing with a tummy ache. We ended up keeping him home because we were with my parents the day before and now my Mom is down with the flu. He may have been legit getting sick. The other thing was that he ate his first burrito ever on Monday night. There was a school fundraiser through Chipotle, where half…

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March 7, 2018