My thoughts

Is the other shoe gonna drop? 

The day has been tough one. I'm really trying to reduce my stress levels but life doesn't want to cooperate. The boys have been out of control today and I'm now officially counting down the days until school starts next week.  Gavin seems to be doing okay today and I'm grateful for that of course, but I can't help wondering when the other shoe is going to drop.  I'll have a larger Gavin update in a little bit. Right now, I'm focusing on relaxing and trying to bring my blood pressure down. I'm currently hypertensive and that's got me really stressed out. I see my doctor on Monday and we'll see how I'm doing then. 

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August 7, 2017
Gavin / Immunology / Medical Crisis / My thoughts

Here’s what we’ve learned so far today

I'm still unable to reach the nurse who let's me know Gavin's lab results, but I do have something to share in the meantime. I received two followup calls from Gavin's immunologist's office this morning.  The first was to check and see how he was doing today. They also wanted to find out his lab results from Friday. I'd forgotten to relay those to them Friday's afternoon. I was too distracted and I screwed the pooch on that one.  I received the second call after his doctor heard the results of his labs. She wanted him scheduled and seem with her as soon as possible. She's not liking the fluctuating levels, and frankly, neither do we.  We will be driving him to a Cleveland on Thursday and from there, figure…

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August 7, 2017
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