Today was one of those days that Gavin needed to come home after school for a few hours.  I figured I would just take him with me to the grocery store.  This would not only limit his time in the house, but also provide me with a chance to work on those real life skills he'll need if he's ever to live independently. When I got to the school and Gavin came out, I was a bit caught off guard to see him dresses in an Iron Man costume. Apparently, it was a special day at school and the kids were allowed to dress up as a superhero. Gavin was really proud of his costume and so I didn't have the heart to make him take it off before going…

I got home a little while ago from our most recent wraparound meeting.  For those new, wraparound is basically a meeting with reps from various agencies.  They help families connect with services and sometimes even problem solve. We have one of these meeting every couple of weeks. Honestly, they been able to connect us to a few things that will help to prolong Gavin's stay with his Grandparents.  I'm starting to feel though that wraparound may have run its course.  I don't know how much more they are going to be able to help.  Our situation with Gavin's mental, physical and emotional health is very, very unique.  Everything about Gavin is also extremely complex as well as uncommon.  It's for these reasons and a few others, that this entire situation…

We received a call last night from Lizze's Mom.  Apparently, Gavin completely freaked out on them.  He was playing Sonic on his tablet and must've gotten frustrated or something.  Her Mom said it was the worst they'd seen. Lizze spoke with her Mom to figure out if anything needs to be done. It sounds like they handled this really well and are even taking his tablet, at least for now. The problem here is two fold.  The tantrum itself is obviously a behavioral issue and a safety issue.  However, this is also a potential life threat for Gavin because his rage could trigger another autonomic crisis. I don't know what to do.  Thankfully, they are working with a counselor type person from DD that is there to assist in such…

Here's the update to Elliott's trip to pediatrician this afternoon.  As predicted, Elliott spent the afternoon freaking out about having to visit the doctor.  Having said that, I figured out something that was able to redirect him.  I tethered Elliott's old Samsung tablet to my phone and setup the GPS and Google Navigation.  He spent the entire 30 minute drive navigating.  It was really cool for him because he felt some control and he got to watch our car moving along the road, in real time.  He did great. When we arrived and we're meeting with his doctor, he did even better.  As we thought, Elliott has sinusitis.  Apparently, we never got rid of it entirely.  This is the third or fourth round of sinus infection in the last 2…

A bit later on this afternoon, Lizze and I will be taking Elliott to the pediatricians office.  He's still not feeling well and he seems to be getting worse.  Because of his Asthma, we have to be very careful. I think this is the 3rd or 4th sinus infection he's had in the last few months.  He gets sick, goes on antibiotics, gets better and then gets sick again a couple weeks later. This is something that is beginning to form a pattern and we aren't sure why. One of the concerns that we will have to address at some point is whether or not he has any immunological issues.  Gavin's immunodeficiency seemingly came out of nowhere and showed up around Gavin 11th birthday.  Hopefully, Elliott's just dealing with another…

I promised to update you all on how Emmett's ophthalmology appointment with Dr. Lawhon went yesterday.  If I could choose only one word to describe our experience yesterday..hmm. Awesome.  I would say Awesome. Emmett's glasses have given him 20/30 vision. There's no need for an eyepatch this time but we'll reevaluate in 3 months.  This is a huge improvement from his natural 20/200 vision without his glasses. Emmett had a great appointment, at least after the brief wait in the waiting room. He loves Dr.  Lawhon and enjoyed the eye chart and the cool Mickey Mouse, spinning laser light thing. Emmett was clammering to get his hands on that toy for awhile.  As far as Emmett was concerned, it was worth the wait.  This appointment was a an overwhelming success. …

Something I don't talk about very often in my outlook on the future. It's not that I'm hiding something from all of you, it's just that I don't like to think about it.  Why? Why don't I like to think about the future? Because I fear it.  There is so much going on in my life that I barely have a chance to think past the moment, but when I do, there are things that weigh pretty goddamm heavy on me. Right now I've been very preoccupied with Gavin.  He's been staying with his Grandparents since October of last year.  It's worked out really well for the part.  Gavin's in a safe and loving place.  Our house is no longer filled with his destructive rage. That's good for all involved.…