Lizze / My thoughts

I hate last minute schedule changes

This afternoon has turned into a giant cluster fuck. It's not a huge deal but it is stressful to have constant changes made to our schedule.  We were getting ready to take Lizze to her appointment (she doesn't drive) and I suddenly realized that Gavin's IVIG infusion was still underway. He had too much time left and there was no way we could ask him tonfinish his infusion in the car.  The only choice to cancel the first appointment and reschedule the second.  I hate canceling or rescheduling at the last minute, but I goofed up in this one. I should have waited until this evening to do Gavin's infusion.  Regardless, it's not a huge deal. Lizze is rescheduled for tomorrow afternoon and Gavin will finish his infusion in the…

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August 7, 2017
My thoughts

I’m going to make the best of it

Gavin's currently getting his labs drawn and I'm anxiously waiting for him. I'm exhausted after a long night of very little sleep, and that sucks. I can also share that I've lost a little over two pounds since last week. As Tired as I am, I'm totally stoked about that. ☺  The boys go back to school in ten days and I really need to get back into our routine. My hope is that this will help with my stress level, and that will help with my overall everything.  As for today, I'm going to make the best of it.. 

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August 7, 2017
Elliott / Emmett John / My thoughts / Sensory

Bedtime has become a sensory nightmare

Last night was a challenge once again because Emmett wasn't tolerating a blanket. Everything has to be just so, in order for him to be comfortable enough to fall asleep.  I'm going to be brutally honest here. I didn't even dick around with trying for extended periods of time to help him work through this.  At this point in time, it's more important that we all get some sleep, rather than worrying about the means in which we obtain it.  Like I said, there was no dicking around. I went straight for what we knew ow works and works rather quickly. That approach is as simple as snuggling and singing him to sleep in our bed. For whatever reason, it's helping him fall asleep.  He used Lizze's super soft blankets…

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August 7, 2017
Fragile Health Parenting / Gavin / My thoughts

I’m incredibly nervous

We head into today, unaware of what it's going to bring us in regards to Gavin's and his ever changing health.  It's a somewhat busy schedule today. I need to get Gavin in for his bloodwork, first thing in the morning. I have his IVIG infusion after that as well. We also have two appointments for Lizze in the afternoon.  I'm incredibly nervous about how Gavin's labs are going to turn out.  The labs from Friday were a mixed bag. It was like a free for all with his numbers. There are three main things we're watching. We're closely tracking his Neutrophil levels, WBC count, and his platelets.  This past Friday, his Neutrophil went down again, his WBC count remained the same from the previous day, and his platelets when…

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August 7, 2017
Inspirational Posts / My thoughts

Sharing our journey with #Autism, Fragile health, #Bipolar and major #Depression

If you've checked out Lizze's blog, you will learn that she's really struggling with depression right now. Please understand that when she's writing about how she's feeling or what she's experiencing, she's not looking for sympathy.  Her mission, much like mine, is to help people understand what it's like to go through something.  In her case, she's sharing her experience with Bipolar II.  It's easy to look at what either of us writes about and feel as though we're being negative. It's important to understand that many times, raising kids with Autism, or living with something like Bipolar disorder, can be very negative.  That's not meant to be a reflection on the people with either condition because it's not.  The only way to help people better understand what it's like to…

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August 6, 2017
Autism Parenting Insight / Gavin / My thoughts

Just because he can speak doesn’t mean he can always communicate 

Gavin has been sleeping most of the day thus far. He says he's feeling fine but this is unusual for him.  It's really difficult to know how he's feeling because he's not a reliable source of information about himself. I know that sounds weird, as everyone should be the best source of information about themselves, but not in Gavin's case.  Gavin lacks a great deal of self awareness and that's needed in order to convey to others, with any accuracy, how he's feeling.  Merriam-Webster defines communication as a technique for expressing ideas effectively (as in speech) He may say he's feeling fine because he's not in any physical pain. That said, he might be feeling run down, tired, nauseated, or sick. It's really hard to know with any certainty, how Gavin's…

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August 6, 2017
Read more about the article I’m not feeling a great deal of energy coursing through my veins
My thoughts

I’m not feeling a great deal of energy coursing through my veins

We have absolutely no plans for today. It looks like rain is going to be the theme of the day, and that eliminates any outdoor activities.  The above mentioned weather is taking a heavy toll on Lizze. She's miserable and in a great deal of pain.  Emmett and Elliott seem to both be in good moods, while Gavin is sleeping again. I'm trying to get Lizze to go lay down but she's insisting on helping me take on the rest of the morning.  I'm not feeling a great deal of energy coursing through my veins yet, and therefore I may take it easy for a bit. 

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August 6, 2017
Read more about the article We’ve been hit with a new #Sensory issue
Emmett John / My thoughts / Sensory

We’ve been hit with a new #Sensory issue

We've hit an unexpected, but not all too surprising bump in the road with Mr Emmett. I've shared many times how sensory processing disorder impacts his life on a daily basis.  Here are a few examples.  Emmett hasn't worn shoes and socks in over a year. He's worn socks temporarily on a few occasions over the last year but that's all. He will only wear crocs, but not just any crocs. His crocs have to have a smooth insole. There can't be any texture to it, or else he won't wear it.  His shirts have to come exactly to his waist. Any more and it's too big. Any less and it's too small.  He will only wear pants that don't button or snap. He can't do buttons or snaps on…

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August 6, 2017