My wife and I have made a very difficult decision



I haven’t heard anything about Gavin’s IVIG infusion meds yet and he will be missing his sixth infusion in a row on Monday. As a result, Lizze and I are having to make some difficult decisions.

It’s completely reasonable to assume that with every missed infusion, the risks to Gavin’s health increase. We don’t know anything for certain or to what degree the risks increases but I think it’s perfectly reasonable to take precautions at this point.

With that being said, Lizze and I have decided not to expose Gavin to large groups of people. Things like crowed movie theaters, family gatherings and even the grocery store are needless risks. Again, we know for sure is that he has a severely compromised immune system.

We know for sure that he will never get better and over time, he’s likely to get worse. We know for sure that his IVIG infusions every Monday and Friday are absolutely critical. We know for sure that Gavin’s wellbeing is our responsibility. We also know for sure that as of Friday, he’s already missed five infusions in a row and that’s never happened before. We know for sure that we are in uncharted territory. We know for sure that this whole thing makes us very nervous and all we can do is what we feel is best.



As it stands, he will likely miss Monday’s infusion as well.

We did let Gavin go to the July 4th race to cheer on Lizze and the boys. At the time, it seemed like the right thing to do, but since then, he’s missed his fifth infusion and we’ve had to reevaluate things. His medication never arrived and we have no idea when it will. I can’t in good conscience, put Gavin in situations where he could be exposed to things that he wouldn’t be at home.

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Maybe this seems like we’re overreacting but is it really possible to overreact in a situation like this?

This isn’t easy to do and it wasn’t an easy decision to make either.

I wanted to take everyone to see the new Ant-Man and The Wasp movie on Friday but pulled the plug because it just wasn’t worth the risk. There’s a family reunion today and we’re keeping Gavin home from that as well. The boys and maybe, if she’s feeling better, Lizze will go (it’s on her side of the family) but I’ll stay home with Gavin.

There are no instruction books for this and this isn’t a paint by numbers.

We have to do what’s best in a situation where there are too many unknowns and no clear cut answers.

Is this being overprotective? Maybe.

Are we being unreasonable? No, I don’t think we are.

Gavin doesn’t care one way or the other. He’s busy struggling with his Schizophrenia and running missions to save the Universe. Lizze and I agree that erroring on the side of caution, especially considering all of Gavin’s serious health problems, is the right play.

There maybe people who disagree with our approach but this is our decision and we stand by it. If something happened to Gavin, we couldn’t live with ourselves.

This is an example of the kinds of impossible situations, special needs parents can find themselves in. Doing the right thing isn’t always the obvious choice. Sometimes it means having to make decisions that may seem unfair but ultimately serve a higher purpose.

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Gracie
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I admire the path you have taken, knowing that limiting Gavin’s exposure to the world also limits y… https://t.co/175lNvFcDY

The How And Now Of Essential Oils
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I think you are making the right decision. Bless you and your family.

Maria Hall
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What’s the holdup getting his medicine? Something with the manufacturer? (Sorry I haven’t been keeping up apparently)

Amber Smith
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Honestly as a parent I would do the exact same thing. Too many bad flu and colds out this year plus the non vaccinated kids (not trying to start a debate, I understand your reasons people) it just isnt worth it to gamble Gavins life.