When good news is frustrating 

I try to document our adventures as best I can, but not at the cost of being present in the moment with my family. Part of why I do this is because it helps to provide further context into our journey.  Yesterday, I had to get Gavin to Akron Children's Hospital for an eye exam. He's been complaining of episodes where his vision goes dark and all he can see is blackness.  As it turns out, his vision issues have nothing to do with his eyes. That's good but frustrating at the same time. We still don't know what's going on or as one of my readers pointed out, whether or not these are really happening.  No one thinks he's making this up but at the same time, perhaps he's…

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The good news and bad news about Gavin’s eyes

Aside from the ridiculous wait times at the doctors, Gavin eye appointment when well. The good news is, Gavin's eyes check out perfectly healthy. The bad news is, we have no idea what's causing the vision blackouts.  Again, it's awesome that his eyes checked out. I'm certainly grateful for that, please don't misunderstand. At the same time, he's having problems with his vision that isn't related to his eyes.  WTF are we supposed to do with that? 

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OMG.. This is taking FOREVER 

Gavin and I have been at Akron Children's Hospital for two hours now. Not much has happened. Gavin had a basic eye exam and then some more specific testing as well.  We've spent more time waiting for someone to simply speak with us, then anything else.  My brain is still fried from this morning and this wait is not only killing me, but it's not been easy for Gavin as we. 

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It breaks my heart every single day

After taking the boys to school, we will return home for a short while before heading to Akron Children's Hospital. Lizze will be staying home cause she has a doctor's appointment of her own.  Gavin and I will be making the trek to see his eye doctor, in order to figure out why he's having vision blackouts.  There's a shitload of construction and I'm going to have to find an alternative route to the hospital, but I'll let Google handle that for me.  I'm praying this appointment goes well because on a purely selfish note, I really can't take anymore bad news in regards to Gavin's health. It breaks my heart every day to see him go through all he goes through.  As bad as this sounds, I'm hoping that…

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Difficult decisions

The boys are spending the night at their Grandparents house. We opted to keep Gavin home with us because they were going to a large family gathering, and we're avoiding Gavin being places like that until after we see the hematologist. Lizze and I had been looking forward to going, but that was before we learned about Gavin's newest medical problems. We talked about having him hang out with my parents but they were unavailable. We both wish things were different, but this could quite literally be a life or death thing. If his numbers dropped again, and we didn't know, it's could be very serious. We are choosing to error on the side of caution. Making these types of decisions, are not something that everyone will understand. Frankly, nobody…

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Super Major Update and Awesome News

I wanted to let everyone know a big thing happened while we were at Gavin's immunologist last week. I already mentioned how we discussed his labs and why his numbers keep dropping.  What I didn't tell you is that his immunologist cleared him for our trip to Florida. ☺  There's a great bit of detail that I'll save for another post, but the bottomline is, Gavin will be able to make the trip. That was something we were concerned about but also holding out hope that it would be okay.  Like I said, there's more to the story, but it's really late. I will say this.  There is a great deal of concern over Gavin's health, but his numbers, while still low, are out of the immediate crisis zone for…

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Gavin’s IVIG infusion was a success 

Gavin had his IVIG infusion last night, because we were gone for most of the day. He did really well both during and after his infusion. Aside for physical exhaustion, there weren't any side effects that I was aware of.  Like I said, he was exhausted afterwards, and went to bed shortly after the process concluded.  Gavin looks a bit run down, but isn't complaining of anything, not that he really ever does. As far as I know, the only issue he is struggling with today is that his hip popped out once again. My understanding is that hurts like a bitch.  I'm not making any plans for today because I want him resting, especially because of how run down he appears to be. 

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Major Update: All about Gavin 

We have a lot of catching up to do in regards to Gavin. Now that the server is up and running, I can finally do that. Gavin had his immunologist appointment yesterday. He did really well on the trip up and back. Sometimes he struggles in the car but he did great. We met with Gavin's immunologist and discussed everything that was going on with him at length. What we were able to confirm was that we have no idea what's causing the levels across all cell lines to go up and down. We can assume it's the Clozapine but there's no way to know for sure unless we remove it, and that's a huge deal. His levels have come up out of the more critical levels, but they're still…

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