I know that some of my readers feel that we are too hard on Gavin.  That the rules we have implemented are too strict or even cruel.  While I have stated countless times, the reason behind these rules, it still seems to fall upon deaf ears. Today was a perfect example of why we have to have rules like this.  It's so important to remember that there is a rhyme and reason behind everything that we do, even the stuff that is difficult to understand or that on the surface, appear mean or cruel. Keep in mind that what I'm about to share with you is not a result of Gavin having a tantrum or being upset.  In fact, to the contrary, Gavin was having a great time and was…

My sweet little Emmett John will turn 5 years old tomorrow.  He's had a long and challenging journey thus far but is here with us today and for that we are really grateful.  I haven't quite worked out the details of tomorrow's events but they will likely be simple.  We are of modest means and anything too exciting will just cause him to be overstimulated and miserable.  Right now he wants Little Caesars Deep Dish Pizza and Crazy Bread.  As far as birthday presents are concerned, he remains undecided and so we're working on that as well.  I can't believe that he's going to be turning 5. It seems like just last week, he was wrapped up in his wallaby blanket, fighting off severe jaundice.  It seems like just yesterday,…

I wanted to share something that I've added to my site that gives you the ability repost any one of my post, past or present, onto your blog.  This process is as simple as copying and pasting the embed code into a blankness on your site.  The process is simple and all you have to click on the button in the top right corner of each post, as seen in the screenshot below.  Doing so will give you instructions on how to produce an exact copy of what you see on my site, onto your personal site. Using this method, you can also do so without first seeking my permission. I just wanted to introduce this new feature to you and let you know why it was there.  Please feel…

This morning is already taxing what's left of my sanity. Gavin will not stop talking and I'm pretty sure my head is going to explode, so you might want to take a step back. He's manic and this isn't his fault but holy crap, his random thoughts are endless. Dr.  Patti said that this is a manic thing with a smidgen of wanting to be the center of attention. From my perspective, that actually makes a great deal of sense.  This morning, we are watch cartoons on Netflix and Gavin is giving us a play by play of what's happening.  It's a lot like going to the movie theater and sitting next to someone who just won't stop talking the entire movie.  You get to the point that you (or…

This Manic Monday ended with another cold shower.  I still can't get Dominion to call me back.  All I know is that everyone I've spoken to at Dominion has said this shouldn't have happened. I need to speak to a supervisor to get this fixed and there in lies the problem. It could be worse but I'll try again in the morning.  Let's see...... Today was full of stuff.  We had Cleveland Clinic stuff and Emmett meltdown stuff. I'll start with the Cleveland Clinic stuff first.  We went to the Cleveland Clinic today to meet with Lizze's Gastroenterologist.  The two topics today were Celiac disease and Gastroparesis (slow stomach). It's suspected that she has both but we don't know for sure.....yet. Lizze had repeat lab work done this afternoon to…

Last night Gavin had a really bad bout of chest pain. We were leaving my parents house and he doubled over.  It's really  frustrating because no one can ever find anything wrong and we just had him to cardiologist a few days before this whole CPS thing went down. The really scary part is that Gavin never complained.  Elliott found him and came running to get us.  This begs the question, how often is this happening?  Gavin's really strange in the sense that he never complains about serious things and severe pain.  However, he will completely freak out over a hang nail. I've always been told that it's likely a sensory thing but it really makes things more challenging, especially when it comes to keeping up on his health.  Anyway,…