Kids are meant to be kids.  They're meant to be care free and full of life. When you are a special needs parent to a child with fragile health, sometimes you have to do things that you don't like, in order to ensure their health and well being. That's the case for the Lost and Tired Family, with our oldest Gavin.  With everything that Gavin has going on and because they are so incredibly rare, there isn't much known about the disorder's. We don't have a clear cut set of instructions or limitations that we should impose, in order to ensure his health and safety. I want so badly to let Gavin just be a kid.  I would love to be able to say to him, go be a kid.…

Gavin's cardiologist from Akron Children's Hospital, personally called this morning to discuss our concerns about Gavin current heart rate issues. I explained what was going on and what I was worried about.  Part of my concern is the fact that his resting heart rate has been so high for so long.  For right now, he isn't so much concerned about the numbers because Gavin is so young. However, we do need to closely follow him and make sure that nothing else develops as a result.  This might sound like this isn't a big deal.  The reason for that is because this isn't actually a problem with Gavin's heart itself.  The problem is in Gavin's brain and the way in which it's controlling the heart. The concern arises when we look…

Gavin woke up this morning in extreme abdominal pain. So much so that we called both boys off and we walking out the door to head to the ER at Akron Children's Hospital. Elliott and Emmett were going to my Mom's while we were on the way up. Before welcomed leave however, Gavin began to feel better. The reason I was freaking out is because Gavin was totally freaking out.  He was doubled over and screaming. While Gavin has a pension for the performing arts, mainly drama, he did seek to be faking anything. This also had Elliott stressing out as well, in a pretty big way and in the moment, I wasn't going to even try to make him go to school.  Plus, we were going to be leaving…

Emmett has been freaking out since about 6am this morning.  He's definitely gotten up on the wrong side of the bed. I'm going on no sleep because I'm personally freaking about about what to do for Gavin. I really, really, really, really need today to go as smoothly as possible.  I can't handle the fighting and screaming right now.  Hopefully, we will  be able to rise above some of these things today, if for no other reason than to preserve what precious little sanity I have left. 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,…

One of the things many special needs parents are lacking is a friggin instruction manual for their often times, quite complicated children. I realize that no child comes with a set of instructions but most parents are able to muddle through. When it comes to special needs children, it's almost a cruel joke that they don't come with at least guidelines. I mean honestly, who do we need to talk to about this? Special needs parenting is hard enough as is.  Parents like ourselves, could benefit from a basic set of guidelines or in structures. At least I know I would. When it comes to Gavin, I find myself in desperate need of a goddamn instruction manual. With everything he has going, he's so complex and so unique that no…

You know something? Despite all the screaming he's capable of, Emmett is the absolute sweetest 4 year old I know.  Admittedly I'm probably a smidgen biased but what parent isn't? Anyway, today Emmett fell asleep on the couch patiently waiting for Elliott to get home from school so they could play together.  He looks so peaceful.  Incredibly uncomfortable but peaceful nonetheless.  :-) Emmett John, Daddy loves you so very much.  :-) 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…

Elliott brought home another masterpiece from school today.  I'm not sure what inspired this gem but I like it... :-) He's really in to drawing pictures lately and giving them away.  He's such a total sweetheart and I love him to itty bitty pieces.  :-) 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.

Gavin's only been home since lunchtime but already, my fears are being realized.  Things for Gavin are worse than I realized.  I've been monitoring Gavin's heart rate, either through the monitor that syncs with my phone or his heart rate watch. Gavin while sitting, had a heart rate of around 130/bpm. He simply stood up and walked around.  I'm talking just walking and nothing even remotely crazy.  His heart rate jumped to 150/bpm. When I have him sit down and rest, it instantly drops to 80/bpm. This is why it's so important that he be watched so closely.  If not, things like this slip by without being detected until it's too late.  I'll be honest, I'm really worried about this because there isn't anything we can do but park him…