Read more about the article Phone calls from the school during the school day are never good
Autism Parenting Insight / Elliott / Emmett John / My thoughts

Phone calls from the school during the school day are never good

Just when I thought things were finally settling down and we could catch our breath from all the Gavin drama this morning, Lizze gets a phone call. Elliott is in the school office with a fever and needs to come home. I had to drop what I was doing to retrieve him from the office and bring him home. Of course, I would drop everything to retrieve one of my kids, what parent wouldn't? Elliott isn't feeling well, but I'm glad that we were able to make him more comfortable. I'm currently waiting for Emmett to come out of the school and he's going to be a bit flustered because he doesn't like surprises. This will probably throw him off and make waves in his world for a little while.…

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April 15, 2019
Read more about the article Gavin had a massive, massive meltdown this morning
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn't wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn't going well. It's been about an hour, and I just got Gavin calmed down enough to try working with him on his infusion. Gavin was so angry that frankly, he wasn't safe to be around. Angry is probably the wrong word. He wasn't angry at anyone. I think he was so frustrated with the infusions continuing to leak; he was beyond what he could cope with. I'm glad the kids weren't home because they would have been terrified by his behavior. Gavin was screaming as loud…

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April 15, 2019
Read more about the article Longer needles are needed
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn't arrive until late and then he ended up in the hospital. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn't want to put the extra stress on his body. Missing one infusion isn't a huge deal. It's not something we want to do for shits and giggles, but considering the circumstances, it was for the best. I have to call Akron Children's Hospital today because we need to order longer subcutaneous needles for his infusions. His doctor wants to try one size longer to help address the issue of his infusion leaking, requiring frequent resticks. Gavin's…

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April 15, 2019
Read more about the article The weekend sucked, but I’m feeling pretty good
My thoughts

The weekend sucked, but I’m feeling pretty good

After a long, physically and emotionally draining weekend, I'm feeling like we ended up being very lucky. Gavin's emergency was dire and very scary. It's impossible to explain what it felt like in those moments leading up to calling 911. Both Elliott and Emmett were affected by the experience. You can't see the things they saw and not be impacted by it. Elliott seems to be doing okay. Although truthfully, he internalizes everything and it may be a bit before we know how much he was impacted. Emmett was most visibly upset. He was distraught seeing Gavin in the condition he was in. He was afraid Gavin was going to die. Poor Emmett was curled up in the fetal position sobbing in the corner of his bed. It was so…

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April 15, 2019
Read more about the article I won’t be disappointed by a slower week
My thoughts

I won’t be disappointed by a slower week

I slept like a baby last night. The level of exhaustion I was experiencing was beyond words, and I'm so grateful for the excellent night's sleep. Lizze isn't fairing as well because of her body's reaction to extreme stress. It had been an incredibly stressful 24 hours, and she's now paying the price. Anyway, Elliott is getting sick with an upper respiratory thing, and I'm unsure of what he will be looking at for school this week. Emmett's super hyper and a bit emotionally overwhelmed by everything that transpired but is otherwise doing well. Gavin is doing well. He slept through the night and is doing well as he builds up the levels of clozapine in his system. Miss. Ruby has finally shed her cone of shame, and she couldn't…

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April 14, 2019
Read more about the article My Son was Rushed to the Hospital: An Important Update
Gavin / Major Update / My thoughts

My Son was Rushed to the Hospital: An Important Update

Alright folks, first of all, I want to thank everyone for all the thoughts and prayers over the last 24 hours. We were really scared and all truly appreciate it. Before I call it a night, I wanted to update everyone as too what happened. My brain is absolutely fried, and I'm exhausted from a long, emotional 24 hours, so I need to keep this short and sweet. We started Gavin back on Clozapine Friday night, after a discussion with his doctor. It was decided that Gavin had reached a point where we didn't have any choice. He was put back on 300mg, and we were told to give it to him at night because it will help him to sleep through the night. He'd only been off the Clozapine…

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April 14, 2019
Read more about the article Gavin’s in the hospital and here’s what happened
Gavin / My thoughts / Thoughts and Prayers

Gavin’s in the hospital and here’s what happened

As I'm writing this, I'm sitting on the floor at the hospital, because Gavin was rushed here by ambulance tonight. We aren't entirely sure what's going on. He's stable but in rough shape. We suspect it's a reaction to his meds. I had actually recorded a pod this morning and talked about what's going on with Gavin. It's easier to just listen than for me to try and explain everything. Since this pod was recorded, we had to start him back on the Clozapine, per his doctor. Gavin was not doing well, and Clozapine is the only medication he can take. We suspect he's having a reaction to going back on and it was pretty scary. It's still scary because he's not doing good. About midnight, Gavin collapsed in the…

15 Comments
April 13, 2019
Read more about the article We’re missing a critical delivery
Gavin / IVIG Infusion / Medication Management / My thoughts

We’re missing a critical delivery

Alright, so we have another little problem. With all the craziness going on in regards to Gavin's detachment from reality, we overlooked that Gavin's IVIG infusion supplies haven't arrived yet. This is not a huge deal at this point, but we've been having issues with nationwide shortages of his IVIG medications recently. We've had to switch meds a few times in the last year, and that's not a good thing. There was a temporary issue with his previous delivery being delayed a week, but the supply was replenished, and his delivery received. I'm waiting to hear back from the supplier. Usually, we get his supplies the week he runs out, so it's not unheard of for them to arrive on the actual day his infusion is due to happen. It's…

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April 12, 2019