Common Variable Immunodeficiency Archives - Page 234 of 260

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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August 18, 2017

Elliott / Emmett John / My thoughts / School / Victories

Here’s the verdict from the first day of school

I'm greatly relieved to be able to share that the boys first day of school was an overwhelming success. All of the kids that were a problem last year for Elliott, are no longer attending. This is amazing news for Elliott and anyone else that was troubled by this last year. ☺ Both Elliott and Emmett like their new classrooms, teachers and classmates. There might even be hope for them eating the school breakfast, as the food has changed this year and is supposed to be much better. Best of all, not one person said anything to Elliott about his backpack. We clearly got off to a rough start but I'm thrilled with the way it all played out. I'm hoping that tomorrow is just as good, but with a…

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August 17, 2017

Elliott / My thoughts

But isn’t that a girl’s backpack?

While shopping for school supplies this year, I found myself in a position where I needed to make a decision that could have an impact on Elliott, as he moves forward. For some reason, Elliott decided that he was going to go a completely different direction in deciding what backpack he was going to get for the new school year. As a Dad, I was sorta caught off guard when he picked out the backpack in the picture below. There were some really cool backpacks he could have chosen from and I made sure he had plenty of choices. We searched Amazon but in the end, he had his heart set on this pink backpack at Walgreens. I'm very open minded and have raised my kids to be true to…

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August 17, 2017

Gavin / My thoughts

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?

18 Comments

August 17, 2017

Akron Children's Hospital / Gavin / My thoughts

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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August 17, 2017

Clothes / Emmett John / My thoughts / Sensory

That was a fucking disaster

Nothing with Emmett went well this morning. All of the clothes we had picked out and he pre-approved would work. Shorts were too small or too big. Either the seams or the buttons irritated him. His shorts felt weird and so did his pants. All of these things led to our very first meltdown for the new school year. We were of course late as a result, but he finally was able to work through it but not in a way that met with the dress code. Frankly, I don't care about the dress code anymore. While he made it to school, he came very close to not making it to school and that's got me frazzled. I know he's nervous and that he had a really bad nightmare last…

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August 17, 2017

Akron Children's Hospital / Gavin / My thoughts

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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August 17, 2017

My thoughts

I spoke with the principal

It's the first day of the 2018 school this morning. We barely made it to this point, but I'm super proud of all of us for making it. ☺ We finally found clothes that Emmett will wear, at least in warmer weather, and Elliott is already good to go. Unfortunately, our trip to the grocery store was a bust, at least as far as Emmett is concerned. We couldn't find anything that he would eat for lunch. Let me clarify my last statement. We couldn't find anything for the main part of his lunch. He won't eat a sandwich, cold pizza, anything else he used to eat, or anything else we suggested We did manage to get some smaller things for his lunch. Things like apple sauce, jello, yogurt, juice,…

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August 17, 2017