Gavin Archives - Page 66 of 113

Heartbreak is absolutely crushing me tonight

The boys and I had therapy tonight with Dr. Pattie. While I typically enjoy these family sessions, tonight's was a little rough for me. Tonight, Gavin unloaded a string of mission debriefings. I know how much he likes telling us all about the missions he goes on with his invisible friends, and I would rather hear about it than not, but it sucks. It sucks because it's crystal clear in those moments, that Gavin is not okay. It sucks because it shows that he's still seeing things that aren't there. He still believes that he's a superhero, who's fighting intergalactic battles, against evil villains. Tonight he went on about three of his latest missions. I'll just list the bullet points: Snatchers Elements of Harmony Telepathically entering Twilight's mind Disections Sword…

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June 28, 2017

Common Variable Immunodeficiency / Gavin / Immunology / Inspirational Posts / IVIG Infusion / My thoughts

New reasons for special needs parents to worry about healthcare

56 Comments

June 28, 2017

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

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

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

Autism Parenting Insight / Gavin / My thoughts

I’ve officially applied to Make A Wish for my son

At 2 am this morning, I was unable to sleep. I've got many things on my mind and I couldn't shutdown. One of those things weighing heavy was this whole Make-A-Wish thing for Gavin. I began the process after Gavin's immunologist suggested we apply last year. The process halted for a variety of reasons, but two reasons created the most friction. The first of which was Gavin didn't want to do anything. If he was unwilling to participate, there's no point in continuing. The second reason was more emotional on my part. Knowing your child qualifies for Make-A-Wish is a doubled edged sword. On the one hand, it's such an amazing opportunity for Gavin. On the other hand, he qualified in the first place. To qualify, things have to be serious about…

26 Comments

June 24, 2017

Gavin / Heartbreak / My thoughts

He’s getting worse and I can’t hide from that truth anymore

It's becoming more and more difficult to pretend that Gavin's not getting worse. I know he's never going to get better, and that's something both my wife and me have come to accept over the years. While I've accepted that fact, it's not that cut and dry. Gavin's in an almost constant state of decompensation. Sometimes it's a slower process, and harder to pick up on, while other times, it's pretty rapid. One of the main issues revolves around his memory. I tend to want to rationalize it by saying something like, he's just having a bad day or everyone forgets things. The truth is, it's not normal to forget things like Gavin does. It's not normal and it's not a good. Here's the latest example of what I mean.…

12 Comments

June 24, 2017

Gavin / My thoughts

He deserves to catch a break

Gavin woke up this morning without a headache. That's always a positive thing because headaches suck. He has enough going on in his young life, and deserves to catch a freaking break every once in awhile. It's heartbreaking to for any parent to see their kids suffer. I can't tell you how many times I've prayed to have his burdens placed upon my shoulders. Unfortunately, those prayers have been left unanswered. Instead, I will watch him continue to deteriorate before my eyes, because that's all I'm able to do.

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June 20, 2017