Our appointment at @AkronChildrens for a Holter Monitor: We’ve arrived

We finally made it to the Akron Children's Hospital, Heart Center.  Traffic was a bit crazy but nothing we couldn't handle, with a bit of patience and my mad driving skills.  :-) Lizze signed us in and we are patiently waiting for Gavin in to be called back. We are actually inside the William H. Considine Professional Building, on the 5th floor.  This is the building directly across from the main entrance to the hospital. I don't expect this to take a great deal of time and hopefully, we'll be home soon because I'm exhausted don't feel like driving.  Be sure to check back later on to see how the process of having a Holter Monitor put on went. This site is managed via WordPress for Android, courtesy of the…

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Hello @AkronChildrens, we’re coming for our Holter Monitor

We are on our way to Akron Children's Hospital to have Gavin's Holter Monitor....um..... installed/attached. This will record his heart rate and rhythm for a period of 24 hours before we return the device to the hospital on Tuesday. It may sound weird, but I'm pretty excited to have this done.  This is hopefully give us a better idea of how to help Gavin. This may be annoying for Gavin but it's painless and just something he has to do.  This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways…

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Worst nights sleep ever

Everything in the Lost and Tired household is so out of whack right now that Lizze, the person  with the sleep disorder, didn't sleep last night.  I didn't fare much better myself.  There is too much to worry about and I just can't seem to  shut my brain off. With Lizze, it's a combination of PTSD and hot flashes keeping her awake.  Yes, Lizze has PTSD.  Officially diagnosed and caused by all the abuse she endured at the hands of her ex - husband. Gavin is a huge trigger and the stuff he's done to her is straight up messed up. The bottom line is that the both of us are going on little to no sleep as Monday begins to overtake us.  This site is managed via WordPress for…

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@AkronChildrens Hospital: Our home away from home

This week, I'll be making 4 trips to Akron Children's Hospital.  It's only about a 30 minute drive on most days but I'll be there 4 out of the 5 days this week.  Monday, Gavin gets fitted for his Holter Monitor. The actual appointment shouldn't take very long because they are just attaching it to him.  However, he'll be home from school....all day.  He has to wear this for at least 24 hours and that will give his cardiovascular team a better idea of what is going on with his heart.  When the monitoring is completed, most likely on Tuesday, I'll drive the device back up to the heart center so that the results can be read before our appointment on Friday. This appointment will be to discuss what's going…

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More pieces to the mysterious puzzle

Lizze discovered that Gavin is losing control over his bladder.  We're finding his clothes and they are soiled.  I'm not sure exactly when this is happening or why. My guess is that this is tied to the autonomic dysfunction. Bladder control can be affected by autonomic dysfunction and he has had troubles with this, even before he went to stay with Lizze's parents.  While they never said anything about this being a problem while at their house, I can't imagine how it wasn't.  I expect to hear from Gavin's autonomic specialist at the Cleveland Clinic early this week.  I'll be sure to let them know what we are finding.  In the past, this has happened at night.  However, Gavin's never had this type of problem before, so this wouldn't be…

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Today’s #Parenting Victory: Taking time for myself

Thanks to my amazing wife (you can find her at My Life Beyond Labels), I was able to sneak out and hit the track at the park again.  My goal is to get in 15 miles at minimum per week.  Today, I was able to sneak in 3.05 miles in just over 50 minutes.  At around 300 lbs, that's pretty good time.  It's actually a bit slower than usual.  I'm normally doing about 15 minute miles.  I have to lose weight and my goal is to lose at least 40 lbs busy the end of the year.  Getting away is not easy, especially with 3 special I'll needs kids and my wife incapacitated most of the time.  I'm hoping to find a used treadmill at some point so I don't…

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Confessions of an #Autism Dad: I’m only human

I'm totally aware that the meltdowns are not their fault. I also know the difference between a meltdown and a tantrum. What I don't know, is how much more I can take today. Good lord, it feels like it's been one meltdown after another.  Emmett's been a constant stream of screaming and melting down,  over God only knows what.  Trust me, if I could identify the stressor, I would do horrible things to it and make it go away and leave him alone.  Of course, if the stressor is one of the other boys, that would make me a monster so scratch that idea.  The ugly truth is that even though I know, these meltdowns aren't his fault, they are quite literally driving me crazy.  I can feel myself cracking…

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A Cat a Dog and a kid with RAD walk into a bar……

Let me just share how the last 12 hours have gone. The Cat Last night,  Lizze and I were watching a movie and we heard this really loud noise.  It sounds like someone was trying to kick in one of the bedroom doors. Maggie and Bella heard it at the same time and they followed me upstairs. To be honest, I don't know what I really expected to find but it was a bit creepy. When I got upstairs, I couldn't see what was going on.  Next thing I know, I see my bedroom door shaking  and I hear this howling.  The dogs were going nuts but I finally found the source of the commotion and shouted for Lizze to come upstairs right away. I wish I would have gotten…

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