Common Variable Immunodeficiency / Gavin / Immunology / Inspirational Posts / IVIG Infusion / My thoughts
New reasons for special needs parents to worry about healthcare
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June 28, 2017
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…
June 27, 2017
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…
June 27, 2017
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…
June 27, 2017
You won’t believe what he looked like
I think Emmett had a pretty good birthday. He had received his birthday gift early from us, but we had a special dinner tonight. We're actually going to officially celebrate on Friday or Saturday. We were going to go to Chuck E Cheeses, and use the guest passes we received after our horrible visit a few weeks ago. Unfortunately, they were crazy busy and we decided to put that off for another day. We've sorta started a new tradition with the kids. Lizze and I will take the birthday boy out for some special time as Emmett calls it. Right now, Emmett is debating between Chuck E Cheeses, and going to see the new Transformers movie. My vote is for the movie, but whatever makes him happy. ☺ I did…
June 27, 2017
He’s happy so that all that matters. Right?
My babies have arrived home from their grandparent's house. It's really nice to have them home again. Emmett and Elliott are getting along pretty well, making the reunion even more awesome than it otherwise would have been. Gavin is pretty much Gavin. He's feeling pretty good, but is hold up in his bedroom, with his hallucinated friends. He's happy, and that's what matters the most. Having said that, it does suck horribly as a parent to see this happen.
June 26, 2017
Tough time sleeping
I had a really hard time sleeping last night. I think it was mostly allergies because I was really stuffy. Anyway, Lizze and I both slept in because we could. She's off to class, and the boys should be home from their grandparent's house any minute. As much as I need a break from the stress and chaos, I really miss them when they're gone. Actually, they just got home, so I'm going to cut this short for now. :-)
June 26, 2017
Why we spent our down time feeling down
We've had a really long day. It was a mixed bag of good and bad, but it was a day we survived. In fact, there were even some times we thrived. ☺ I mentioned in a previous post that Elliott and Emmett had me up for most of the night. As a result, I got off to a rough start this morning. Lizze was struggling as well because of one of her health issues. We had a relatively lazy afternoon because we both felt like shit. It sucks that we had to spend our down time feeling down, but if the kids were here it would have been so much more difficult. Thankfully, we both felt better as the afternoon wore on. After dinner, we went for a nice long…
June 25, 2017