Fingers crossed, prayers sent, and positive thoughts… 

We're off to get Gavin's bloodwork done for the four time in four days. I truly hate doing this to him but it's what has to be done. I was hoping to go for a walk but the weather isn't looking too good.  I'm going to be very much on edge until we get the results back this afternoon. Based in the results, will likely determine how I proceed.  Waiting for the results to come in is absolutely torturous, and it eats me alive.  Finger crossed, prayers sent, and positive thoughts... 

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I have a little bit of good news today

Let me begin by saying thank you for all the thoughts and prayers that have come in from all over the world. Lizze and I are truly grateful for all of you. ☺  I have quite a bit of information to share and I'm trying to do it in an effective way. Feel free to ask questions below and I'll do my best to answer or clarify.  First things first. Gavin's lab results came back today and his numbers are up. They are up alot, but they are higher than yesterday, so that's an enormous blessing.  His Neutrophil levels are back to 2.1 and his white cell count is 3.4.  The reality is, his numbers are scraping the bottom of the okay range and we aren't sure why. I spoke…

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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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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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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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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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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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