Read more about the article A major milestone and why it’s so important
Common Variable Immunodeficiency / Gavin / Immunology / Medication Management / My thoughts

A major milestone and why it’s so important

We began the new year with yet another IVIG Infusion for Gavin. He needs these twice a week because his immune system is severely compromised. These infusions literally keep him from succumbing to things that most people's bodies will fighting off without them even knowing. This is a very serious, life threatening condition and there is no cure. In all the years we have been doing these infusions for Gavin, this is the first time that we're going into a new year with Gavin performing this procedure completely independently. This is such a major milestone for a kid who's terrified of needles because this process requires him to stick two needles directly into his belly. He's come such a long way and I'm so proud of him for learning to…

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January 1, 2018
Read more about the article I had to reapply for @makeawish
Common Variable Immunodeficiency / Gavin

I had to reapply for @makeawish

I told you the other day that I sent Gavin's information into Make-A-Wish, after waiting for him to decide he would be okay with possibly having a wish granted.  I replied to the email I received from Make-A-Wish, with the requested information.  After a day or two, I got a message back because my email had been bounced. Perhaps the person I was working with, no longer works there. Maybe I was bounced back by security. It doesn't really matter, because I had to resubmit my inquiry yesterday.  I received a confirmation back and simply need to wait for them to contact me.  I'm not sure what happened, but in all fairness, the initial inquiry was end of last year. The hold up was basically Gavin not wanting to do anything. We didn't want…

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June 27, 2017
Read more about the article It sends Gavin into a panic every single time
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

It sends Gavin into a panic every single time

Gavin's IVIG infusion is well underway and aside from a few hiccups, it seems to be going well. The hiccups I'm referring to are the result of one of the needles in his stomach leaking. This isn't a huge deal in reality, but as far as Gavin's concerned, it's the worst possible scenario. Sometimes, part of the solution will leak out from underneath the tape. This will send Gavin into a total panic like he experienced this morning. It's easily fixed, and worst case scenario, the needle needs to be reinserted. I don't blame him for not liking that, but it rarely comes to that. Anyway, we fixed the leaky needle and his IVIG infusion is continuing without any further issues. He decided he wanted to do this procedure in…

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June 27, 2017
Read more about the article Why Gavin’s important treatment was withheld
Common Variable Immunodeficiency / Gavin / IVIG Infusion / My thoughts

Why Gavin’s important treatment was withheld

With everything that went on Monday, we weren't able to get to Gavin's IVIG infusion. He's supposed to receive these infusions on Monday and Friday, but sometimes it doesn't always work out.  Getting this done a day later isn't a huge problem. There is some overlap in this schedule, and that's by design. We never make it a habit of putting these infusions off, because they are a very serious thing. Without receiving these donor antibodies, Gavin's body wouldn't be able to fight off illness. It's a pretty big deal.  The main reason we pushed his IVIG infusion back a day this week, is because he was complaining of reflux.  These infusions provide him with the immune system his body naturally lacks however, it takes a lot out of him. If he's not feeling well, we try…

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June 27, 2017
Read more about the article Gavin’s having health issues tonight
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin’s having health issues tonight

You may recall that Gavin sorta refused his IVIG infusion this morning, because he had a mission to go on first (see Why I'm worried about Gavin today). We were simply going to do his infusion tonight, because it wasn't a huge deal. It was the fact he wanted to put it off, and the reasons why he wanted to put it off, that concerned me.  After dinner, he was getting ready to get his supplies together, and he got hit with some major reflux. It put him down for an hour or so because he wasn't feeling well.  I decided that we would put his infusion off until the morning, because he's already struggling and the infusion is pretty rough on his body.  Once the reflux subsided, he was hit…

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May 23, 2017