I think he’s out of shits to give

I've been noticing a behavioral change in Gavin and I feel comfortable saying that it began during COVID lockdown. I've stated that Gavin’s been doing really well and that's absolutely the case. What I'm writing about today is more annoying, disruptive, and a bit curious than anything else. Here's what's happening. Gavin startles very easily and I mean very easily. That's not a problem in and of itself. The issue is that when he's startled, he now screams at the top of his lungs, and sometimes falls out of his seat or throws whatever is in his hands into the air. This happens across the board. He doesn't watch things that are even remotely scary. Tonight, Emmett was playing the Xbox and he was looking around a room. When he…

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It’s pretty bad but thank God no one was hurt

My thoughts are scattered. As a result of tonight's events, my stress level and worry are at all time highs. It's probably best if I just start at the beginning because I'm sorta processing all this in real time. My feeling are still raw and I'm unsure of what's going to happen. Pictures are on the last page. I learned that both Elliott and Emmett were having a rough day after I picked them up from school. Elliott had his mechanical pencil stolen and Emmett had his water bottle stolen. Neither of these things are huge deals to me but to the boys, it's was a huge deal and a betrayal of sorts. Things have been tight financially and so we haven't been able to really do anything that wasn't…

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I’m confused but ultimately relieved after our visit to @AkronChildrens Hospital today

Let me start out by saying that this was a very good appointment and I expect nothing less from Akron Children's Hospital. They've never let us down. ☺ It's not too often that we go to an appointment for Gavin and walk out with what amounts to good news. Today was very clearly the exception to that rule. I'll bottom line it for you and then talk about something that happened while we were there. We met the doctor and he was very soft spoken. He took a lore than reasonable amount of time, answering my questions. He looked over Gavin's labs and said that truthfully, his numbers look pretty good, even when we had thought they were pretty bad. That caught me off guard at first because we've believed…

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I’m thankful it happened but I’m heartbroken that it’s necessary

I've been sorta struggling a bit lately but I'm feeling pretty good today. I ran into an old friend from high school and it was awesome catching up. It was one of those things that was unexpectedly random but it changed the course of my day. 😀 Anyway, I wanted to catch you up on a few things that I'm behind on. In my opinion, these are really positive things but at the same time it's heartbreaking that it's a necessity. Maybe you remember that we've been trying to get Gavin into Hematology for the better part of a year. He was referred by his immunologist because of his on again off again neutralphilia. We have no explanation for that or the sudden, random drops in his platelet counts as…

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Thank you Wishes Can Happen and the @AkronZoo for an amazing day

I wanted to take a minute and thank Wishes Can Happen and the Akron Zoo for a fantastic day. Wishes Can Happen sponsored today's trip for us and many other previous wish families. We got to visit the local zoo, meet other families who have been touched by Wishes Can Happen and have an amazing lunch. We all had a great time and truly appreciated the experience. For those who may not recall, Wishes Can Happen is a local wish-granting organization. They function on a local level and grant wishes for kids like Gavin, with life-threatening health conditions.  Last year, they granted Gavin's lifetime wish of going to Lego Land in Florida. It was an amazing ten-day vacation and also happened to be the first family vacation we'd ever taken. I personally hadn't been…

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Here’s how Gavin’s surgery went at @AkronChildrens Hospital today

Unfortunately, I'm not feeling very well tonight and I think it's my body turning on me because of all the stress. I'm going to make this super quick because there isn't a great deal of information to share for another week or so. As I said eariler, Gavin's surgery went well. The staff at Akron Children's Hospital are second to none and we are so grateful for how well they treated Gavin. The entire procedure was about thirty minutes and it went smoothly, without any complications. Gavin did well under anesthesia and that was something we were a hit concerned about because of his autonomic disorder. When the doctor met with us after, she explained that almost everything looks great. They only problem they found was in his stomach. There…

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Guy Time at Quail Hollow with my #Autistic kids

Lizze was still in a bad place yesterday. She was in so much pain, she could barely move. Unfortunately, that put a dent in our plans to take the boys hiking at Quail Hollow. We ended up having Lizze go back to bed to get some rest, while I took the boys on my own. Lizze needed the time off and the boys really wanted to go back to Quail Hollow. I figured that we could probably use some guy time anyway. We hit the trails that we missed the first time around and hiked for a little under 2.5 miles. Everyone did great and we had alot of fun. It was probably the first day in a week where the heat index wasn't over 100°F. The weather was warm…

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Hiking at @StarkParks Sippo Lake with our #Autistic kids

I'm way behind on this particular post because it's been a long week. That being said, I wanted to share pictures from our hike at Stark Parks Sippo Lake. We planned this day trip the night before and it was only about a twenty-minute drive from our house. This particular hike was a bit less aggressive than our previous hike at Quail Hollow a few days prior. The path took us on about a 1.8 mile journey through lightly wooded and marshy areas. While we prefer the more off the beaten path kinda trails, this was still absolutely beautiful. The boys struggled with this one more than they did at Quail Hollow and that hike was over a mile longer. I think the problem was the crushed limestone path. The…

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