Gavin’s #IVIG infusion was a very frustrating experience today

So Gavin’s medication arrived. We went through the newly received supplies and figured out how to draw up the new solution. Previously, we were using 3, 10cc vials for a total of 30cc’s of solution.

With the new medication, there are 2 vials total. The first vial contains 10cc’s and the second contains 5cc’s. That makes for a total of 15cc’s and exactly half of the solution he had previously been infusing.

The total amount of actual medication remains consist at 3 grams.

With that out of the way, the bad news is that Gavin likely won’t be able to do these on his own, at least for now.

I realize he’s a bit out of practice but he made mistakes, the biggest of which wasted about 5cc’s of the medication. He wasn’t even aware he had done it, so it isn’t even really a teaching moment.


    • Sandra on July 16, 2018 at 8:52 pm
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    WOW! That looks complicated. Have you tried taking pictures of the proper order of doing things and printing out the pictures? I don’t know your son’s reading level, but you could have simple sentences describing the order of things. Children with autism often learn better with visuals. Have him read, look at the pictures and do the steps. You could do “backwards chaining” and do the first few steps with or w/o him and have him do the last one or two steps by himself, gradually increasing the steps he does himself.

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    • Becky Wiren on July 13, 2018 at 5:31 am
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    It’s the feeling of fighting a battle, but not really winning as much as coming to a stalemate. You had to fight to get Gavin’s IVG, and now you have to fight to help Gavin keep skills he had. There’s rarely a feeling of resolution and completion. I get it. In a lesser way we have similar things here. So we’re hoping for the best for Gavin, you and your family.

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