From my perspective

I thought I would share a few pictures from our trip to the Cleveland Clinic.  Again, I'll have a new video blog up in the morning.  It's worth the wait and worth the watch. 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 to help the Lost and Tired family, please visit Help the Lost and Tired Family.

0 Comments

The end of an emotional day

I know a lot of you are probably wondering how today's trip to the Cleveland Clinic went.  Rather than try to put into words everything that has happened over the past 2 days, I did a video blog that will either post tonight or tomorrow. It's about 25 minutes long but I needed to vent. A the moment, Gavin's doing well but we learned some things today that we didn't know.  To be honest, we didn't realize how truly fragile Gavin is. I explained it all in the video. Right now I'm emotionally and physically drained.  I have nothing left tonight.  I just wanted to let you all know that we appreciate all your support.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note…

4 Comments

Despite horrible traffic, we’ve arrived at the @ClevelandClinic

After a drive that felt like it would never end and several missed elevators, we've finally made it to the Cleveland Clinic for Gavin’s appointment in the autonomic clinic. Wish us luck. 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 to help the Lost and Tired family, please visit Help the Lost and Tired Family.

0 Comments

Confessions of an #Autism Dad: I wouldn’t wish this pain on anyone

Today hasn't gone as planned.  Elliott's home because of a nasty cough that we need to watch and stay on top of. He also seems to be dealing with another sinus infection as well.  We are going to have to get him into the doctors because it moves to his chest. Gavin's been home since last night and has done pretty well so far.  A huge part of Operation Hope was that Gavin be removed from the home because of his extreme behavior and mental health issues.  He was breaking the family apart and traumatizing his little brothers.  He's not a bad person at all.  He's simply wired in a way that makes it difficult for him to coexist when there is any type of emotional expectations.  That's a huge,…

0 Comments

John C. McGinley Talks R-word

I love this message. Please help spread this video around and get it as much attention as possible. This is a great cause that every human being should support. :-) https://www.youtube.com/watch?feature=player_embedded&v=04Ser5wmPSA#!

4 Comments

What’s it like to be a special needs parent?

If there was one thing I wish I could make the world understand about special needs parenting, it would be the amount of stress that comes along with it.  Don't get me wrong, there are plenty of amazing things as well. However, the thing that most people just can't seem to wrap their heads around the extreme levels of stress that special needs parents have to function under. I can say beyond a shadow of a doubt that special needs parenting is far and away the most difficult thing I have ever faced.  I used to be a firefighter/paramedic and the stress I faced in that job pales in comparison to what I feel each day of my life as a special needs parent. Please don't mistake this as a…

7 Comments

Thank you for your love and support

I wanted to thank you all for your love and support today.  This has been a really rough day and I'm completely burned out.  Gavin is doing pretty well and is asleep on his room for tonight.  Lizze and I need to have him to the Cleveland Clinic tomorrow afternoon and we are going to have a conversation with the doctor and find out how to proceed from here.  I know that we are making some medication changes while we are there but there are a number of concerns that we need to address, among them are trying to get a prognosis. My goal is to get myself in a better place so I can make the drive and survive the rest of the week.  Thanks again for everything...... This…

1 Comment

Autonomic Crisis: Stable-ish and home again

After a few hours in the ER at Akron Children's Hospital, Gavin was stable enough to be released.  We opted to reschedule his IVIG infusion so as not to push our luck.  The reason I say Stable-ish in the title is because he's as stable as he's going to be. His heart rate is still too high but it's not the 150-160 bpm that it was this morning.  Stable-ish seems to be the best way to describe where he is right now.  As for what triggered this crisis, it looks like Gavin ate way, way too much for breakfast. Especially before a car ride.  Between that and the drive to Akron, he very rapidly decompensated.  This is why it's so vitally important to watch his intake lime a hawk.  It's…

4 Comments