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

Gavin is in his room now and officially admitted.  There's too many weird things going on to be comfortable sending him home, without watching him overnight at the very least. Lizze and I decided that she would go home and I would stay this time.  Staying would take way too much out of her and I'll fare better than her so it was the right decision.  The boys will be staying with her parents, because Lizze really can't watch them for that long by herself right now.  Plus, if she needs to get back up here in the middle of the night, this will make things easier. Gavin's doing pretty well, at least to look at him. The room is nice and relatively comfortable.  Gavin's been playing a word find…

As we were preparing to be discharged, another doctor came into the room and wanted to talk with us about what was going on.  Because they never see anyone like Gavin, they are relying on how we feel about the situation.  To be completely honest, I'm uncomfortable with Gavin being discharged because this doesn't feel right.  Somethings wrong and I don't even want to put him in the car. I'm concerned about the sweating, rash and his heart rate is bouncing around.  If you looked at Gavin as a normal kid, he would be considered stable. However, Gavin's not the average person and these symptoms have only ever been present during a major crisis. If we leave, I have no idea what's going to happen.  This presents us with a…

We just got back from Gavin's MRI.  He did fantastic and I'm so proud of him. For MRI took about an hour and he broke down sobbing towards the very end and we had to pull him out for a break before doing one final scan. The staff said he did really, really well.  Now we have to wait for the results to come in. Dr. Moodley was contacted and Gavin appears to autonomically stable and so he can most likely be released to go home. They are suspecting that the vision disruptions may have been caused by an Ocular Migraine. We have to see his neurologist at Akron Children's Hospital before seeing Dr. Moodley in September. Gavin's in good spirits but is still making me nervous.  He's still soaking…