Read more about the article It’s getting harder to cope
Gavin / My thoughts

It’s getting harder to cope

I'm having a harder time coping with Gavin lately. God forgive me but he's driving me fucking crazy and I simply don't have the patience he deserves to receive from me. It's important to understand that Gavin's isn't necessarily doing anything wrong. He's just being Gavin. The emotions I'm experiencing in regards to coping is probably two fold. It's part frustration because Gavin's functioning at maybe fifty percent of what he was, say two years ago. The other part is pure, unadulterated heartache because he's only functioning at maybe fifty percent of where he was two years ago. The frustration and heartache are very real. They are very, very impactful emotions, that are at odds with each other. I find myself frustrated by his behaviors and exhausted by how difficult…

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March 26, 2018
Read more about the article There are times as his father, I have to turn away and cry
Gavin / My thoughts

There are times as his father, I have to turn away and cry

Lizze and I had a fairly decent night to ourselves. The E's were at their Grandparents but Gavin was home. It's not really a night off, even with Gavin being the only one home. Gavin is becoming more and more difficult to manage. That wears heavily on us both physically and emotionally. It's physically exhausting because it's physically exhausting. It's emotionally exhausting because it's painful beyond my ability to articulate, seeing Gavin decline to the extent he has. Heartbreaking is probably a better word choice. Gavin is such a sweet kid but he's 18 years old and we have to seemingly micromanage his every move. We have to make sure he doesn't hurt himself doing something he shouldn't. We have to make sure that all the things that he doesn't…

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March 25, 2018
Read more about the article I was able to give Gavin his #Clozapine tonight
Clozapine / Gavin / My thoughts

I was able to give Gavin his #Clozapine tonight

We were able to get Gavin's Clozapine refilled today. I had to make a few calls but the script was ready for pickup at 7:30 PM tonight. That's definitely a step ahead of what it's been for the last few months. I'm not sure if the new process we are trying with the doctors office is responsible for this pleasant turn of events or if it was the new bloodwork order, with very specific instructions. Maybe the stars aligned and everyone simply did their jobs. I guess the only reason I can is because I'd like to repeat this every week. It's a huge relief when I don't have so battle to get his lab results sent and his script refilled. All that truly matters right now is that I'm…

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March 12, 2018
Read more about the article This morning was all about Gavin
Gavin / My thoughts

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
Read more about the article It was a disastrous morning for Gavin
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
Read more about the article The number one source of stress in my life right now
Clozapine / Gavin / My thoughts

The number one source of stress in my life right now

I'm so incredibly frustrated today because for the millionth time, the pharmacy hasn't delivered or even filled Gavin's Clozapine prescription. I don't understand why this is so fucking complicated. Out of all the medications a pharmacy can fill, Clozapine is the most tightly controlled by a mile. One would think that they would have a procedure for filling it. My job is to make sure that Gavin's blood work is done once every seven days. The labs job is to fax the results to the pharmacy. The pharmacy must then fax the results to REMS. REMS will grant the pharmacy permission to release seven days worth of pills. This process repeats every single week and as long as everyone does their fucking job, we can continue to give Gavin his…

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March 6, 2018
Read more about the article Gavin’s IVIG infusion is NOT going well
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / Vivint Gives Back

Gavin’s IVIG infusion is NOT going well

Gavin's IVIG infusion is not going well this morning. For some reason, we can't get any flow and I'm having to force the solution through the tubing manually. It works but it's very difficult and quite painful for a Gavin. I don't know what's wrong for sure, but it could be scar tissue. All I can do is continue to force it through or re-stick the needles in his belly. Gavin wants to avoid being re-stuck and I don't blame him. Hopefully, this will finish up sometime this afternoon and he will be okay. I'm just going to keep an eye on him through the Ping camera from Vivint Home. I've found so many uses for this system but the best have involved using the cameras to monitor my kids…

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February 26, 2018
Read more about the article Childhood Disintegrative Disorder is stealing our son from us
Childhood Disintegrative Disorder / Gavin / My thoughts

Childhood Disintegrative Disorder is stealing our son from us

This post was started on Friday and has taken me this long to finish. It's been a long weekend and I apologize for my absence. I was largely absent here today because I'm struggling a bit right now. I'm having a hard time coping with certain things at the moment, Gavin being one of those things. I'll be the first to admit how terrible that sounds. I can assure you, it feels worse for me to say that. Gavin is driving me crazy and it's taking a toll. As time moves forward and his overall condition worsens, it becomes harder and harder for him to think. He has a much more difficult time trying to think his way through even the most one dimensional situations. These are things like figuring…

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February 26, 2018