Lizze and I have been talking talking today about Gavin and his health. This situation has become so complicated.  Our journey has taken many unexpected turns and we are left with almost zero visibility. Knowing the right thing to do in even the simplest of situations can be very difficult and have very, very real consequences. The boys have a cousin, celebrating her birthday today.  Elliott and Emmett were going to go and we were going to keep Gavin home because he just got out of the hospital and neither one of us wanted to let him out of our sight.  He's entering what seems to be a new phase in his fragile life and we no longer know up from down. At the very last minute, we decided instead,…

Today I find myself really, really frustrated with Gavin. I know it's not really his fault but it's frustrating nonetheless.  Without going into details, I will say that Gavin clogged the toilet so bad this morning, that it took a bottle of drano and 7 hours of plunging to fix.  As I said, I'll spare you the details. I will say that this isn't the first, second or even third time this has happened. He keeps making the same mistakes and just leaves the mess for someone else, namely me, to clean up.  Lizze and I have both tried to show him what he's doing wrong but nothing he just does it again. I'm not really angry with Gavin but at the same time I am. Does that even make…

Everyone is doing pretty well today, with the exception of Lizze. She's no having a good day at all. Right now she's resting, Gavin's sleeping and the boys and I are finishing up lunch.  This is our last weekend before school starts.  Elliott is very resistant to returning to school and it's causing some behavioral problems.  I'll explain more when I have time.  At the moment, I'm hanging out with the kids.  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

I promised that I would share how Gavin's doing and what our next move is going to be. Explaining how Gavin's doing isn't a simple task because we don't really know how he's doing. I know that probably sounds really weird but that's the truth. I suppose I could say that he says he's okay, for whatever that's worth. The reality is that Gavin's off. We know that something isn't right but there isn't anything that we can do at this junction. He's as stable as he's going to be. His heart rate has been dropping lower than his current baseline, established over the past year. In fact, after we got home, he looked really pale and I had him check his heart rate and it was in the low…

I wanted to let you all know that we have e made it home, safe and sound.  Before getting into how Gavin s doing and our plans going forward, I was to take a second and thank everyone.  I was to thank Akron Children's Hospital and all their amazing staff, for taking such good care of Gavin over the last 24 hours.  Thank you to Dr. Moodley at the Cleveland Clinic for working with Akron Children's Hospital to help Gavin pull through this latest Autonomic Crisis. We can forget our parents.  Thank you for helping out with the boys and letting us use your car. Last but not least.  Thanks goes out to all my readers for their thoughts and prayers.  We are so grateful for all of you and…

Gavin is getting discharged this morning.  While his condition hasn't really changed, he's not getting worse.  We may be dealing with a new baseline now.  In other words, this may be his new normal. Every once in awhile, Gavin experiences a shift in his health.  The resulting changes become his new normal. Does that make sense? Anyway, that may be what were dealing with at this point. The last major shift was his first Autonomic Crisis, about a year ago. While this isn't good news, it does explain the bizarre experience he had and why his symptoms aren't changing for the better but at the same time aren't getting worse. Whenever this happens, it takes some getting used to because the changes make us very uncomfortable at first. For now,…

We survived the night.  Gavin is actually still sleeping and slept straight through the night.  There were several doctors that came in throughout the night to ask questions and examine Gavin. He's been doing a lot of coughing, his color is still off and he's sweating.  The blood pressure machine has been having a really tough time getting his blood pressure, which isn't really typical. I'll know more as Gavin wakes up and eats breakfast. Thank you so much for your past, current and continued prayers. 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

First of all, I want to thank all of you for your thoughts and prayers today.  This has been a really, really long day. Gavin has had the last of his meds for the night and is finally asleep. He's doing about the same, which is okay but still concerning.  We'll have to see how he's doing in the morning . I'm getting ready to go to bed, if I can actually sleep. I'll check back in whem Gavin wakes up in the morning. Good night 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