Big news and why I’m feeling blessed

There's no denying that we are facing many challenges in the Gorski household. We're facing some heartbreaking physical and emotional health issues as well. In the last post I shared about how Gavin was regressing and what we were seeing right now that truly broke our hearts. In this line of work, we learn to take the good with the bad. We celebrate the good and dig down deep to keep moving forward with the bad. I received a piece of amazing news that I haven't had a chance to share but it's important that I do because it shows what can happen when you fight for your kids. A few weeks ago, Gavin was scheduled for NeuroPsych testing at the Cleveland Clinic. This was extremely important because he is…

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That doesn’t make it any less heartbreaking

Unfortunately, I have some bad news to share. It's in regards to Gavin and the progression of his cognitive decline. Sometimes it's tough to discern when and where Gavin regresses. There are times when it's painfully obvious that there's been a change and other times it's more subtle. This is one of those times where it's painfully obvious that there's been a change. It might seem like a weird thing to notice but it's something that can impact him multiple times a day. Gavin can no longer remember the four digit code to unlock the front door. He's known it for years and it's not changed. He will get to the door and just stand there because he no longer knows what to do. This has been going on for…

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Holy Shit! Gavin hit a MAJOR milestone tonight

Every once in awhile, the kids do something that completely blows me away. They always impress me but sometimes, what they do is a real game changer. Tonight, was one of those night for Gavin. For the last five years or so, Gavin has been receiving IVIG Infusions in order to treat his Common Variable Immunodeficiency. In all the hundreds of infusions, Gavin has always hated the needles and who can blame him. He's never liked them but at the same time, he's never complained. ☺ Over the years, he's slowly taken more and more responsibility for his infusions. He's gotten to the point where the only thing he wasn't able to do was put the needles in his belly. He has been to uncomfortable doing that and that was…

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The @GPSTC just did something amazing for Gavin

Awhile back, I received an email from someone representing The Georgia Public Safety Training Center. They had found my YouTube channel and began watching the videos I've uploaded over the years. There was one in particular that they were very interested in and it was one of Gavin having a total meltdown/tantrum. The video was a lengthy one and showed me interacting with Gavin as we worked through this particular episode. It is important to note that this particular video was more of a tantrum and less of a meltdown. The video shows Gavin experiencing one of these episodes and me dealing with it. The GPSTC wanted to utilize the video to help train the police, fire and EMS in Georgia, how to interact with people on the Autism Spectrum.…

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Gavin’s day just got way better

Gavin has something to look forward to this afternoon. He's going to be joining my parents as they venture about an hour and a half outside of town, to retrieve my Grandmother and bring her back for Thanksgiving. He's so excited to surprise her with his presence. lol They'll be leaving this afternoon and returning in the evening. I hope he has fun and enjoys the time with his Great Grandmother. ☺

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Gavin’s driving me crazy

It's no secret that I'm worried about Gavin for a great many reasons. I love this kid to death and will continue to do whatever I can to help him live the best life he possibly can. At the same time, I'm a human being and have limits to what I can deal with. Having said that, Gavin is driving me absolutely crazy. I'm stressed out enough with everything going on around me and that puts a serious strain on the limited resources in which I use to cope with life. Gavin has spent the bulk of his life as an incessant talker and unfortunately, that's something that seems to be getting ever more incessant. I don't know what you call a significantly increased level of incessant talking but it's…

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Gavin’s labs have come back

Gavin's labs have finally come in and it's better than bad news. His Absolute Neutrophil is up to 2.8 from 2.4 last week. This is good news because the numbers are moving in the right direction. At the same time, we still have no idea what's going on. We're still waiting to get into Hematology because this is the best chance we have to identify what's going on and how we can address it. I feel a sense of relief at he moment because his members are good right now and will probably be good for the next couple of days. I can't let my guard down because we have learned over time, that with Gavin, what goes up must come down. It's like we're waiting for the proverbial other…

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Gavin’s not doing well tonight

I waited all day and the lab results never came in. I spoke with the doctors office a few times and they have assured me that they will email me the results as soon as they get them. Being the overprotective, borderline paranoid parent I am, I continued to follow-up until they closed. Unfortunately, that didn't get me anywhere but frustrated. I know in my head that waiting until tomorrow isn't the end of the world but when Gavin goes to bed not doing well, it's like pouring gasoline on my worry fire. I'll be following up in the morning and hopefully find some answers. I'm pretty fucking stressed out but I'm managing.. ☺

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