childhood disintegrative disorder Archives - Page 258 of 276

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

Autism Parenting Woes / My thoughts

I’m not handling things well

I'm so out of sorts right now. I'm scared to death about what's going to happen to Gavin. It's probably safe to say that I'm not handling it well at the moment. I've got so much nervous energy, I can't stop my leg from bouncing up and down on the floor. I ended up jumping down Lizze's throat, over something that was stupid. I shouldn't have done that. I'm so on edge, that I'm simply have no patience. I feel sick to my stomach and I keep closing my eyes, hoping that when I open them, this would all have been a dream.

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August 2, 2017

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

Blessings / My thoughts

A couple reasons I’m feeling blessed

We have a lot going on right now. At the time of publication, we still haven't received the results from Gavin's labs drawn a few hours ago. I'm on edge and feeling like I'm losing my mind. Inside all the chaos, fear, worry, and heartbreak, I'm managing to focus on the blessings. Right now I just want to share how blessed we are to have such supportive families. I'll only speak to our parents because they are the most actively involved and deserve to be singled out. Both Lizze and I have very, very supportive parents. There's rarely a time that we've not been able to call them at the last minute to watch the boys when something comes up. Between our parents, we are able to get breaks from…

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August 2, 2017

Emmett John / My thoughts

My little shelf straightener

Emmett and I made a quick trip to the grocery store. Ever since he was little, he would stop as he was going down the aisle, and straighten up the shelves. He's even put things back where they belonged. At that point in time, Monk was still on TV. Emmett reminded me so much of Adrian Monk, and that's a compliment because I loved that show. I took this picture yesterday. My little Monk still has it. ☺

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August 2, 2017

My thoughts

Hurry up and wait

We just got back from having Gavin's bloodwork redone. It's gonna take a few hours before we hear anything back. I can't explain how long the next few hours are going to be. One of the things we've had to learn over the years, is how to hurry up and wait. I'm so nervous and I just want to know what's going on.

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August 2, 2017

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

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