I wasn’t doing so well this morning

I had a rough night trying to sleep. It's all allergy related but it still makes sleeping very difficult for me. Lizze was kind enough to get the kids to school this morning. Actually, it was only Emmett because Elliott is quite clearly not feeling well. Anyway, I'm feeling much better after getting some sleep. There's not really anything on the agenda for today. I might try and work out in the yard if I can. As crazy as this is going to sound, we've not heard gunshots during the day in awhile. We hear them at night quite frequently but it's been relatively quiet during the day. This helps me feel a bit safer, should I decide to try and get some yard work done this afternoon. Gavin's doing…

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This almost never happens

All in all, it's been a pretty good evening. I made a decent dinner and since Elliott and Emmett were still at my parents, I only had to cook one time instead of multiple times. Not only that, but everyone left in the house ate it. ☺ This almost never happens but I'm grateful when it does. I grilled some chicken breast and baked a couple sweet potatoes, along with steaming some green beans. It was pretty darn good if I do say so myself. The one problem we did have occurred after the boys came home, and that was bedtime. Emmett flat out refused to go to sleep because he's afraid of having another nightmare. It took quite a bit of effort and patience to get him down for…

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I hate seeing him upset like this

It's been a rough evening thus far, and it's only 6:30 PM. Gavin has had several freak outs since we've been home. A freak out is not the same thing as a meltdown because they typically don't last as long. Basically, this is what we call it when Gavin gets really upset over something and begins hitting himself or comforting his body. These things can occur during a meltdown as well but meltdowns typically involve screaming and a significant amount of emotional purging. When Gavin freaks out, it's usually because he's pissed off or frustrated over something. These incidents didn't last more than a couple minutes a piece but those few minutes are exhausting because we never really know what's going to happen. The reason he was freaking out was…

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Here’s what happened at @AkronChildrens today

We ended up not seeing the doctor we thought we were supposed to and while we were initially thrown off at first, we really like the new one.. There was a great deal of information but I'm going to make this as quick and concise as possible. Basically, there are at least a few tests that need to be done but there are some complications. We don't really know anything until this testing gets done. Unfortunately, because of Gavin's immunological problems, specifically the Neutrophilia, there's a significant increase in risk of infection from the procedure and until that's resolved, they won't do it. If he was having life threatening gastro issues, they would do it immediately and regardless of his ANC. She explained that what Gavin's needs is semi-elective at…

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We’ve arrived at @AkronChildrens Hospital

While the insane amount of never ending construction didn't make it easy, we have arrived at Akron Children's Hospital. Gavin's all checked in and we're waiting to be called back. It's really a strange feeling being back after all this time. Between Gavin and Emmett, we've spent so much time in this amazing hospital but it's been a minute since we've had to return. It's quite nostalgic to be here today.. I'm hoping this is going to be positive.

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I’m going to be doing this for the rest of my life and that’s scares the crap out of me

I love Gavin. I truly love Gavin. At the same time, the idea of having to deal with his challenges for the rest of my life is scary. I just dealt with a problem and he's still upstairs freaking out. Here's what happened. Gavin came out of the kitchen and told me that he needs to wash his water bottle again because the water tastes bad. I asked him what happened and he couldn't explain it. He had just washed his water bottle earlier today and he was unable to figure out why it rated so bad. As soon as he said that, I knew what had happened. Rather than letting him struggle to figure it out and end up melting down, I wanted to help him work through the…

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No sleep for those who desperately need it

I've been having a very difficult time sleeping for the past few nights. Sometimes it's because Emmett wakes up and other times it because of my allergies. Last night I ended up on the couch in the living room because I was able to breathe better. Breathing better makes sleeping easier for me. The air on the second floor is very dry. I'm constantly running our humidifier but it doesn't seem to really seem to help. The humidity on the first floor is much higher and I was able to fall asleep for a little while. I'm so fricking tired right now and all I want to do is crawl into bed. Unfortunately, my schedule will not allow for that today. I'm going to drop the boys off at school…

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The last time we were here, we received devastating news

Today is going to be one of the biggest days we've had in awhile, at least as far as Gavin and his health are concerned. Gavin finally gets back into Gastroenterology. We've finally come full circle and I'll explain why. It's been awhile since he's been seen and that's only because we were basically overrun with unrelated, but life-threatening health issues that took priority. Gastroenterology was actually what began a huge part of our journey. We made it to one appointment and within a week of that appointment, the Gastroenterologist called, telling us we needed to get Gavin into Immunology immediately. In fact he'd already made the appointment for us. He's the one who discovered Gavin's severely compromised immune system. From there it was a diagnosis of Common Variable Immunodeficiency.…

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