As a general rule, I don’t apologize for any of my kids with #Autism but this is one exception

I mentioned in a previous post that something happened yesterday while at Gavin's hematology appointment. Akron Children's Hospital was great, they always are. You have to understand something before we go any further. This appointment took place where Gavin used to receive his IVIG infusions. We're very familiar with this place after years of visits. Gavin is a sweet kids and doesn't have a mean bone in his body. He would never intentionally try to hurt someone or say something that caused someone pain. Unfortunately, along with missing mean bones, he's also missing a filter. It's not uncommon for kids on the Autism spectrum to lack a verbal filter. They basically say it how it is, and are unburdened by things like inhibition. Typically, kids with Autism don't lie. They…


The Life-Threatening Reason Gavin’s Surgery was canceled (video)

As you likely already know, Gavin was scheduled for surgery at Akron Children's Hospital yesterday. Everything went as planned but we ran into a problem. I summed everything up in the video below because it was easier to talk about it than try to explain in writing. I'll quickly explain what happened before leaving you to the video for the details. Gavin's surgery was canceled at the very last minute and I mean that literally. He was just about to go into surgery when two issues came up. One was workable but one of them led to everything being canceled. The first issue was legal but more of an ethical concern than a legal one. While this did come up and I share this in the spirit of honesty, it's…


We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures

Gavin's a bit nervous but doing well. He's very focused on the IV heading his way and is trying to talk himself through it. He brought a stuffed animal with him to help him be brave, his words not mine. We're waiting for the doctor and anesthesiologist to come talk to us before they take him back. Gavin of course, has some questions a out the IV he's getting but aside from that, everything has already been answered that can be answered. We'll likely be here for a few more hours at the very least. As far as I know, Gavin won't be able to really eat anything substantial until later in this evening. Maybe I've misunderstood but either way, Gavin's done remarkably well with not eating. We're super proud…


Pre-testing at @AkronChildrens Hospital went better than expected

It's been a really long and emotional day. I wanted to quickly let you know how testing went this morning at Akron Children's Hospital. This was all in regards to the medically necessary procedures Gavin needs to have done on the 5th of June. We had been concerned about how he would react to learning what was going to be taking place. Gavin was never going to refuse anything but we were concerned that he would be freaked out after learning about what a colonoscopy and endoscopy are all about. There was never going to be a challenge gaining Gavin's cooperation because that's just how Gavin works. We were simply worried that he would panic and be freaked out for the next 5 days until he was scheduled for surgery.…


Gavin’s had an Upper GI at @AkronChildrens Hospital this morning

Gavin's appointment went really well. I mean, we don't know the results but Gavin physically did pretty good. He could follow directions and it took a little bit because they had to make more stuff for him to drink. I can't say enough positive things about how nice everyone was. They were very patient and not that I need to explain to anyone because it's painfully obvious, but they recognized his cognitive impairments and handled him very well. We don't know the results but we'll get them at his next follow-up. If there's a major issue, they'll call us first.. Thank you Akron Children's Hospital, you've never let us down and always treated us with respect. [foogallery id="80856"]


Wish us luck

We're getting ready to leave for Akron Children's Hospital after a night of little sleep. Lizze and I have both been dealing with insomnia recently and it's making life even harder than it already is. I'm not sure what's causing our sleep disturbances but I bet you a shiny buffalo nickle that it has to do with stress. We are both extended about as far as we physically and emotionally can be. In fact, we're significantly over extended. Lizze can fall asleep but won't stay asleep and I can't fall asleep but will stay asleep, if that makes any sense. Anyway, we're both exhausted and exceptionally grateful that her parents volunteered to keep Elliott and Emmett overnight so we can get Gavin's testing done without having to worry about the…


@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…