The CDD Journey: When it rains it pours

I just received a phone call from Dr. R's office stating that Gavin had exceeded his coverage limits for the year.  They received a letter stating exactly that. Now Gavin is on disability and so is covered by Medicaid.  We have never run into this before and so I'm not sure what's going to happen. This couldn't have happened at a worse time.  We have no idea what new medical care or interventions Gavin is going to need.  I will be spending my day on the phone figuring out what the heck is going on and what our options are,  if any at all.  

4 Comments

Another night of hellish temperatures

Another night of ungodly temperatures and humidity.  Everyone is camped out on the floor in the living room once again. When will the heat wave end?  I heard today we had another 10 days. Hope everyone is staying cool.......  

0 Comments

The CDD Journey: Really starting to worry

Childhood disintegrative disorder: Really starting to worry It's now Thursday night and we still haven't heard from the Cleveland Clinic about Gavin. This week I have been paying much closer attention to Gavin's movements. The more I see the more worried I'm becoming. I don't know if maybe I'm just focusing more on this now or if it's really this bad. Gavin is becoming more and more uncoordinated. He's dropping things more and more often. This is honestly starting to freak me out. I have no idea if this is related to his loss of upper and lower peripheral reflexes but in my mind it makes sense that they are related. It's like his body just isn't doing what he wants it to do. That scares me to death, it really does.…

2 Comments

Autism and Night Terrors

Someone asked me a question today and it got me thinking.  The question was if any of my kids ever have night terrors?  This person was concerned because their ASD has night terrors and they don't know how to help. If you have ever experienced your child having a night terror it's scary and helpless,  ASD or not. A night terror is kinda like a really bad dream that the child is physically acting out.  It's very difficult to wake them from one of these night terrors. In my experience they are very unsettling witness and there was much that I could do but wait it out. Gavin had horrible night terrors when he was little.  I even recorded some to show the doctors because Lizze and I were terrified…

14 Comments

Almost $2000 was raised last night

The Radio Android Show raised almost $2000 for the Autism Society last night. I want to say thank you to everyone for their support, especially everyone at Android Activist for putting this together. We definitely raised some money for a good cause and also raised Autism Awareness as well. Thanks again Scotty for having me on the show. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

8 Comments

The wait is killing me

It's now Thursday and we still haven't heard back from the Cleveland Clinic. The doctor said we would hear from her before Friday. She also said she would call with more questions but she hasn't. I don't know what we are supposed to do for Gavin. Something is definitely wrong and I hate not knowing what we are up against.  I hate being in the dark..... - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

2 Comments

Trying to beat the heat

A pic of Lizze and the boys trying to stay cool in this hellish heat wave. I'm grateful we have one room that is relatively cool. Sending cooling thoughts out to everyone stuck in this same heat wave. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

0 Comments

Radio Android is raising money for The Autism Society

I'm going to speak tonight on the Radio Android Show about Autism. They are going to be auctioning off special Autism Awareness Beanies tonight to benefit the Autism Society. I've said it a million times but I'll say it again, Autism Awareness is possible and the Android community is a perfect example of this. I have done alot of work with the Android community and I have used my ROM's for the Epic 4G to spread Autism Awareness and it has worked. The Android community is an amazing group of people from all over the world. They have embraced this cause and have become Autism Aware. I'm proud to be a part of this amazing community and I thank them for all the support.   Android is Autism Aware I'm…

0 Comments