I've been talking about autonomic dysfunction for the last year now.  I want to give a very basic example of what someone with autonomic dysfunction can experience.  This is about as basic as it gets and hopefully this will help, at least some people to better understand autonomic dysfunction. If you look at this picture, you'll notice that Gavin is wearing a long sleeve hoody. What you don't know is that it was 85°F today, when this picture was taken. Basically, Gavin's body doesn't regulate temperature.  He's almost always cold and so he wears long sleeves all year round. It's just one of the many areas that can be touched when something like the autonomic nervous system isn't working right. This site is managed via WordPress for Android, courtesy of…

Gavin had his first tantrum since returning home, this morning.  Lizze and I had just walked into my parents house to pick up the boys (I suppose it should preface this with, my Mom was watching Emmett and Gavin while we ran to the store).  We were in the house for only a few minutes when Gavin began screaming like someone has chopping off his friggin fingers or something.  In a panic, I ran to the back of the house to where he was, unsure of what I was walking into but it sounded serious.  What did I find? Gavin sitting there watching TV. First of all, Gavin didn't realize that we were there and I caught him off guard when I ran back to check on him and not…

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…