I don’t have the luxury of quiting

At this moment, I’m hiding in my bedroom pretending for a few minutes that I have the luxury of quiting. Quiting everything and just running away.. Of course, I don’t have that luxury and even as I sit here, trying to be invisible, it’s clear…

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Did you know that Gavin’s immune system is severely compromised?

Shortly after noon, Gavin will be in the outpatient infusion lab at Akron Children's Hospital. He will be receiving his IVIG infusion for this month.  This was originally scheduled for Tuesday but life got in the way. I'm not sure who will be taking him. Everything depends on how Lizze is feeling today.  Many times it's easier for her to take him, than sit at home with the two E's. My guess would be that I will be home with the boys today. For those of you wondering what the heck I'm talking about... Let me explain. Essentially, Gavin has no immune system. More accurately, he has a severely compromised immune system.  We discovered this about 2.5 years ago and Gavin has been receiving a donor immune system every month…

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I just can’t even imagine…..

I've lost track of how many time Lizze has moved down to the couch, since entering menopause.  These hot flashes are absolutely killing her. It's about 66°F in our house at any given time.  I keep the air cranked up because she's so hot all the time.  We're lying in bed and it's so chilly that I can't get my feet warm.  All of a sudden, Lizze wakes up and has sweat dripping down her face.  I can't even imagine how difficult this is for her or any other woman for that matter. It's frustrating for me because she's not getting any sleep at night, when the hot flashes are at their worst. This means that she's dead to the world during the day. There's never any peace for her…

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Elliott’s had an emotionally turbulent day

Elliott has had a really rough day.  He's been laser focused on collecting all the power stars on Super Mario 64 DS. Last night he collected the 150th power star and I thought, heck yeah Elliott, way to go. Turns out this would be the proverbial straw that broke the camels back. Elliott was convinced that there were 2 more stars and that all the information, from both Nintendo and the rest of the Internet were wrong. There was absolutely no convincing him otherwise. We spent quite a bit of time trying to work through this tonight. He finally went to sleep but I'm telling you it was a rough night, full of emotional roller coaster ride and tears of frustration.  I'm praying that tomorrow is a better day.  This…

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Emmett’s Artwork

Emmett drew this rather busy rendition of our house today.. Since we've been having a great deal of bad weather lately, he added that as well. We have storm clouds, rain and even wind.  This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired Visit the My Autism Help Forums To reach me via email, please Contact Me

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Trying to contain an outbreak while simultaneously driving the monkey to the airport

So keeping Gavin engaged with people in real life, is getting more and more difficult. At last count, Gavin's left family activities today in order to go play cards with his gang of invisible friends.  I'm torn about this whole thing because part of me doesn't want to play into this and subsequently reinforce with him that things things are real. I fear that this would lead to complications and confusion down the road. On the other hand, until we find a combination of meds that work, that effort would likely be futile anyway. At this point, he's not hurting anyone and he's happy and he's not having behavioral outbursts. He's also making his friends stay in his room so as not to confuse his little brothers. Aside from him…

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