Praying today isn’t a total nightmare
In the morning, we have to be at the immunologist. This means another trip to Cleveland, and we have to be there by 9 AM so that it will be…
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Praying today isn’t a total nightmare
We’re praying this finally helps Emmett with his pain
Today's trip to the immunologist was very trying for me personally. It felt absolutely chaotic and frustrating because everyone was experiencing some degree of anxiety. That made them difficult to…
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We’re praying this finally helps Emmett with his pain
I have GOOD news and BAD news
I'm going to start with the good news first because I feel pretty good about the good news. ☺ We celebrated Gavin's birthday today and I think he really enjoyed…
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I have GOOD news and BAD news
It’s a big day for a number of reasons
It's a big day today for a number of reasons. First of all, we're celebrating Gavin's 19th birthday. He actually turned 19 on January 18, 2019 but asked us not…
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It’s a big day for a number of reasons
It’s terrifying when your child with #CVID can’t get his lifesaving medication
It’s not like receiving a donated liver or kidney, where his body could reject it. That said, Gavin’s body can struggle to accept the antibodies. He can run a high fever, have seizures, experience anaphylactic shock or an autonomic crises can be triggered.
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It’s terrifying when your child with #CVID can’t get his lifesaving medication
Gavin went to bed afraid and that’s not okay
I hope everyone is staying warm. We're having a heck of a time keeping our house warm. It's terribly inefficient and because it's so freaking cold out (-30°F), the furnace…
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Gavin went to bed afraid and that’s not okay
It’s official, schools closed for 2 days and Gavin’s medication still hasn’t arrived
It's official.. There is no school for the next two days due to insanely cold tempratures. Friday is a bit iffy at this point but we'll know more as the…
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It’s official, schools closed for 2 days and Gavin’s medication still hasn’t arrived
How is this even f*cking possible?
While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I…
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How is this even f*cking possible?
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