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.…

Today's been one of those days that just keeps on giving. In some cases that would be a welcomed event. However, in this case, I don't want what today's been throwing at us. We received a call from Gavin's immunologist this afternoon.  These calls are never good. Typically, if she calls us out of the blue, it means that something is wrong.  Today was no exception. The reason she was calling was to let us know about Gavin's lab work from Monday. This past Monday was Gavin's latest IVIG Infusion.  This infusion provides him with an immune system, since his own is defective. Before every infusion, they do lab work to check his immunoglobulin levels.  This let's us know if the dosage is right.  If they are too low, he…

Lizze and I have arrive with Emmett in tow, at Akron Children's Hospital to see Dr. Lawhon in pediatric ophthalmology. As you may recall from a few months ago and tons of super cute pictures, Emmett has been wearing glasses recently to help correct his newly discovered vision problems. Today's appointment is basically a followup appointment to make sure his glasses are helping and don't need to be stronger. There is a chance that if they aren't helping enough he may need to wear an eye patch for a little while. Hopefully of course, that won't be the case. I consider us really, really, really lucky that he actually wears his glasses without a problem, especially enlight of all the sensory challenges he has. Shortly before we arrived at today,…

Today is already not going as planned.  Lizze went to the IEP meeting for Gavin this morning and as soon as she gets back we have to be on our way to Akron Children's Hospital for Emmett's followup eye appointment.  With Elliott being sick, we are going to have to divide and conquer. One of our goals for today was to take Elliott with us to Emmett's followup appointment.  We need to get Elliott in for his own evaluation but he way, way to terrified. We thought if he could see Emmett have his exam, he would realize that there is nothing to be afraid. It was a brilliant plan but one that won't be seeing the light of day. Elliott is just too sick to go along today.  He's…