Been having site problems again and so posts weren't going out in time.  Sorry about that.  I wanted to share how the installation of Gavin's Holter Monitor went at Akron Children's Hospital today. Let me start out by asking something. Have I said how much I love Akron Children's Hospital? If not, I love Akron Children's Hospital. :-) As you are no doubt already aware of, Gavin was at the Heart Center, located inside the William H. Considine Professional Building today.  He's was having a Holter Monitor installed.  I joke about installed but I guess that what happened, in a sense.  The process was quick and painless.  Basically, when we were called back, we were taken to a small room where Gavin was told to sit on the exam table…

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…

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…

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…

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…

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…