Small Fiber Neuropathy

I learned something new yesterday. Rather, I gained a better understanding of what's going to be happening today at the Cleveland Clinic. Gavin is having 3 skin biopsies done this…

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We made it home tonight’s

Gavin was released and we came home. Gavin is as stable as possible.  This was confirmed to be an autonomic issue with no underlying infection etc. Cleveland wants us to…

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Autonomic Crisis: Bridging the gap

There was just a shift change here at Akron Children's Hospital.  However,  someone must be looking out for us because the doctor that just came on did his residency at…

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Autonomic Crisis: Orthostatic Issues

We are at Akron Children's Hospital and they got Gavin back right away.  During the trip Gavin's heart rate went down. When checked during intake it was 102 bpm. When…

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Autonomic Crisis: Akron bound

We heard back from the wonderful Doctors at the Cleveland Clinic.  They do not want him to make the trip to Cleveland unless Akron Children's Hospital transfers him directly.  They…

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Operation Hope: First Contact

I wanted to take a few minutes and update all of you on the current status of Operation Hope. I was able to speak with someone from Stark County Family…

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Like a kick to the crotch

Gavin just had a huge tantrum because we corrected him for saying something to Emmett that was not nice.  As a result, he lost his TV. This was pretty consistent…

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