Emotionally absorbing another heartbreaking struggle, it must be Monday

As with every Monday and Friday for so many years now, Gavin needed his IVIG infusion this morning.

Once again, Gavin put the supplies together in order to receive what essentially amounts to an antibody transfusion. This is only necessary because his body is unable to produce the necessary immunoglobulins needed to fight off infection. In other words, his immune system is severely compromised.

This morning was no different than all of his more recent IVIG infusions. He struggled to put things together properly.



He’s been struggling to draw up the medication, without wasting a good amount of it and spent a large amount of time freaking out over the entire process. He’s been struggling more as time goes by. There was an interruption in his infusions for two and a half weeks and perhaps he’s still a bit out of practice.

At the same time, things like this have been the trend across most facets of his daily life.

It’s both frustrating and heartbreaking at the same time because it’s so important that Gavin be able to perform this procedure on his own and do so properly. As of right now, I can’t say that he’s able to do that anymore. We’re continually working to improve this but it’s often an uphill battle.

Emotionally absorbing this kind of heartbreaking struggle, is not the best way to start the week for Gavin or myself.

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  • kimmy gebhardt says:

    I have a question that might sound awful and I genuinely don’t mean it that way but here goes. Why is it so important that Gavin know how to do the infusions on his own? I understand wanting him to be able to and agree that it’s in his best interest if he can, but since he will never live independently is it really worth causing him so much frustration to try and force the issue? There will always be someone taking care of him so it stands to reason that that person would have to be in charge of his infusions.

    • Facebook Profile photo Rob Gorski says:

      Simply put, we won’t always be here to do it for him. It’s also important that he maintain his skills. If we let things slide, he will slide even more. The more we practice, the better off he will be.

      • kimmy gebhardt says:

        I understand that you and Lizze won’t always be there, but hopefully one of his brothers will be or if not, he would likely be in some sort of residential placement house and they would do it. Keeping skills up is a great idea, but I worry about him getting frustrated and taking it out on himself when he can’t do it. Typing this reply has made me think of something else- have you ever thought of teaching Elliott how to do it? As he and Emmett get older and you and Lizze aren’t able to do it, it will be a good idea for them to know how to take care of and/or help Gavin.

        • Facebook Profile photo Rob Gorski says:

          Kim,

          We aren’t going to put that kind of responsibility on a 12-year-old with special needs. We’re doing the right thing. The moment we stop challenging Gavin is the moment that we let go and accept that there’s no hope.

          • Kim gebhardt says:

            Hi rob. I certainly wasn’t suggesting that Elliott be in charge of the infusions, just that it might be good for him to start learning how they are done. As for keeping Gavin’s mind as sharp as it can be, would kids’ math workbooks be helpful? They have them in almost every level from pre-K to 5th or 6th grade. Even if he’s not learning anything ‘new’ maybe the challenge would be beneficial? For that matter, I’m betting the teachers at the E’s school might have worksheets or something that he could do to help exercise his brain.

            • Facebook Profile photo Rob Gorski says:

              It’s actually funny that you mentioned that because we were just talking about that. Not necessarily just math but activity books in general. We have some we are going to dig out and perhaps order some news one from Amazon if this process useful or beneficial. Great idea…