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We had massive, massive meltdown

Gavin's had a rough day today. He was very easily frustrated and couldn't seem to remember much of what he was being told. A good portion of this was Gavin…

Teaching Gavin to help manage his own health care

Once again, Gavin has been shorted supplies for his IVIG infusions. As it stands, he doesn't have enough left to do his next infusion on Friday. Rather than simply take…

We’re back in #Hematology at @AkronChildrens Hospital

I'm in a really bad mood but that doesn't matter because I have things that must get done. The most important of those things today involves Gavin getting to Hematology…

I have good news and bad news

It's Monday and while Monday's are no one's favorite day of the week, it's a fresh new start for me after a rough weekend. ☺ I want to begin the…

This is why we have to watch Gavin so closely around food

Gavin's not feeling so well. It began last night with him overeating at the cookout. Gavin has never been one with a functional ability to self-regulate. As an example, he…

I’m fighting #Depression tonight

We had a pretty good day. I didn't make it to the park to go walking, but it's okay because I needed to rest instead. I use Biostrap to track…

A quick update because it’s been a few days

It's been a couple days since I've really written anything because I've been recovering from surgery since last Friday. I'm doing pretty good and haven't experienced much, if any major…

We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason

I've just spent the last three hours on the phone, bouncing between Gavin's doctor, the specialty pharmacy and insurance. I swear to God, if I had hair, it would be…