This morning, Emmett was picked up by Lizze's mom.  She hung out with him all day long.  Right before she arrived, Emmett began freaking out.  He didn't want to go alone.  When he say her car pull up, he wanted to know where Gavin was. Lizze explained that he was at school.  Emmett aked her when he was coming home.  Lizze answered that he wasn't coming home today.  Emmett looked at her and said that he doesn't want Gavin to come home.  Once he said that, we figured out why he was stressing out about going to see Grandma today.  He was afraid that Gavin would be there.  Lizze and I were totally taken aback by this.  Up to that point, Emmett had remained largely silent about Gavin in general. …

I received a phone call from Dr. Moodley's office this morning, in regards to Gavin's autonomic disorder. The reason for the call is that Gavin has been dealing with a rather unstable heart rate. Basically, his heart rate will bounce in either direction.  Sometimes, out of nowhere, his heart rate will just from a resting rate of 60 bpm all the way up to 150 bpm. Other times, his heart rate will suddenly drop from a resting rate of 60 bpm down to 39-40 bpm. It goes goes without saying that this is not a good thing.  Dr.  Moodley, Gavin autonomic specialist at the Cleveland Clinic, wants him on a new medication.  He believes that these episodes of irregular heart rates are mini autonomic crises. Gavin will be placed on…

Lizze and I will once again be spending the day at the Cleveland Clinic.  This trip is dedicated to the sleep doctor.  Lizze has a condition called idiopathic hypersomnia. Basically, she needs 15+ hours of sleep a day, whereas most people only need 6-8 hours.  You may remember that for a long time, she was literally sleeping almost all day, everyday. For the past few months though, in a big fat, ironic twist of fate, she's been battling insomnia.  She can go days in end without sleeping. Considering everything that we have going on, that's definitely not a good thing, not that it would ever be a good thing.  We are desperately hoping that she can get some help.  I can only imagine that sleep deprivation would make everything worse…

I have been taking inventory of my parenting skills lately.  I do this on occasion to kinda keep myself in check and focus on the things I need to improve on. One of the things I'm aware of isn't he fact that I'm so tired all of the time.  On most days, it takes a great amount time and energy to get my kid to cooperate and get things done.  They aren't disobedient, it's just that there are so many factors that influence where they are on any given day.  Sometimes between me being tired and them being, well, who they are, I have to employ alternative methods in order to accomplish what needs to get done. On occasion, I've been known to offer incentives for them to listen. Alright,…

Things have been rough lately.  I don't try to hide that or sugar coat other in any way.  However, that doesn't mean we don't have moments where things seem perfect. Perfect is a relatively strong word. Perhaps I should say better, instead. Since Gavin has been gone, Elliott and Emmett have come out of their creative shells.  They are constantly drawing things and cutting them out with their safety scissors.  Sometimes they're creating things for me but most often, it's for Lizze.  They are drawing flowers and cutting them out.  When they're done, they write a special note to Lizze tell her they're sorry she hurts so bad and hope she feels better soon. That aside, it's gotten to the point where it looks like creativity has puked all over…

Lizze received the call today from the Cleveland Clinic's exclusive Pain Rehabilitation Program. As it stands,  the earliest Lizze can get in would be towards the end of January. There are a few things that will have to be done first.  Lizze has to complete her sleep study and have the follow up appointment with the sleep neurologist. They said that this absolutely must happen first.  This way they can rule out apnea. We have figured out most of the expenses will be and here's the break down as it stands now. 1) Cheapest Hotel is $70/night x 15 nights= $1,050.00..... 2) Various textbooks will be about $50. 3) Food (breakfast, lunch and dinner) is out of pocket.  Total expense unknown. 4) If commuting, fuel will run about $200+/week x…

I wanted to share a small victory that occurred today.  This particular victory was won by one Mr. Emmett John. Not only did he wear a shirt for most of the day, but he wore a shirt with a tag still firmly in place. As many of you know, a lot of kids on the #Autism spectrum have sensory issues. One of the most common issues I have experienced with my boys is the dreaded tag. Many kids, including my own, can't stand the way the way the tag feels on their skin. The fact that Emmett is not paying attention to the tag today is a pretty big accomplishment. Typically, Emmett won't even touch clothes if they still have a tag. I'm really proud of Emmett.  He had a…