Read more about the article I’m finding that inspirational 
Gavin / My thoughts

I’m finding that inspirational 

Emmett wine up in a horrible mood today, making everything more difficult. We had to get Lizze to an appointment, and then Gavin to get his lab work done.  Neither of the boys wanted to go anywhere, and thankfully, Lizze's appointment was canceled at the last minute, whole we were in the parking lot waiting. This is the one time that a cancelation like this works out for the best.  I took everyone home before Gavin and I went to the blood lab. I'm so nervous, but I see how strong Gavin is being and that's pretty inspirational. 

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August 3, 2017
Read more about the article It’s heartbreaking 
Gavin / My thoughts

It’s heartbreaking 

This morning begins the new routine of blood work every single day. I'm not sure about Sunday's because the lab is closed. Either way, Gavin's now facing at least ten needle sticks a week.  When I explained to Gavin last night, about the need to daily bloodwork, he broke down and cried.  I didn't go into details about why it was necessary because he wouldn't have understood anyway. What I told him was that the doctor needs to keep an eye on some things in your blood. All he heard from that whole conversation was that he was getting blood work every day.  The poor kid is terrified, and I hate having to put him through this. At the second time, the alternative just isn't okay.  What would be nice…

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August 3, 2017
Read more about the article We received more bad news today about our son
Gavin / My thoughts / Thoughts and Prayers

We received more bad news today about our son

I'm keeping this super short because I feel sick to my stomach. I need to share that we received Gavin's lab results back this evening, and unfortunately it's not good news.  Gavin's numbers across the board have dropped since yesterday. His Neutrophil level has dropped from 2.8 last month, 2.0 yesterday, and 1.8 today. His actual WBC was 3.8 yesterday and today it was 3.2 (I'm pretty sure that what they said.) After speaking with his doctor, Gavin will continue with the Clozapine for now, but needs blood work every single day. That's got Gavin really stressed out, and I don't blame him. I'm barely holding it together myself and it's not actually happening to me.  As I understand it, if or when he hits 1.5, we pull the plug…

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August 2, 2017
Read more about the article Could this be a medical crisis? 
Gavin / General Update / My thoughts

Could this be a medical crisis? 

I wanted to update you on what I learned from Gavin's prescribing psychiatrist. They are going to get the refill pushed through to address the immediate issues of Gavin falling off the Clozapine and never again being able to use it again.  They want his labs redrawn and rerun first thing in the morning.  Before we know what to do next, we need to rule out a lab error. This is why we're continuing with the Clozapine at this point. If we stop the Clozapine and it turns out to be a lab error, Gavin will likely love life as an unmedicated schizophrenic. There aren't any other antipsychotics that would be considered safe for him, at least as of right now.  If the numbers prove to be correct and his…

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August 2, 2017
Read more about the article We need your thoughts and prayers
Gavin / Thoughts and Prayers

We need your thoughts and prayers

I received a call from the pharmacy this afternoon, in regards to Gavin's Clozapine refill. Apparently, there are problems with his lab work from this morning, and he may not be able get his meds refilled. The reason Gavin gets blood work so frequently, is because we must ensure his white blood cells count before they will release another refill of his Clozapine. One of the big concerns with Clozapine is its impact on white blood cells. For the first time in close to five years, his white blood cells count has taken a significant hit. Neutrophil count is what they are looking for, and they range from 1.5 - 8.0, at least from what I can find. Gavin's Neutrophil has dropped down to 2.0. This is alarming and we…

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August 1, 2017
Read more about the article Is it real or is it drama? 
Autism Parenting Insight / Gavin / My thoughts

Is it real or is it drama? 

Gavin's been having a rough couple of days, especially at night. In many ways, he's his own worst enemy. He gets himself all worked up and then he can't settle down.  Friday night we had the medication ordeal. In all the rush to get to calling hours, I want thinking and forgot to physically put his meds in his backpack. When it came to bedtime, he worked himself into a tizzy because he convinced himself that he would never fall asleep until he had his meds.  Missing his meds is not a good thing, however, one dose wouldn't be the end of the world. He would simply pick back up in the morning when he got home.  Lizze's Mom ended up bringing him home around 10 pm (if I recall…

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July 31, 2017
Read more about the article Don’t tread on his routine 
Gavin / My thoughts

Don’t tread on his routine 

Shortly after we arrived home last night from calling hours, we realized that we had missed Lizze's Mom trying to get ahold of us. Our phone were still on silent from the service,  It was about 10 pm when we connected and there was an issue with Gavin. In all the chaos yesterday morning, we forgot to put his meds in his overnight bag. On a scale of one to ten, this is maybe a four or five. One night isn't going to be a huge deal, although this almost never happens unless there's an issue with a refill.  Gavin was apparently upset because he was unable to sleep without his meds. The reality is, he's unable to sleep because his routine was disrupted.  Poor Gavin gets himself all worked…

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July 29, 2017