I just finished another round of IVIG infusions. Everything went well; no infiltration this time. Last time, my vein broke open and all the medicine went into my arm. My arm swelled so much, and was super hard, and it took 4 days for it to go down.
This time, while everything was good, my perseverations reached an all-time high… something Mom and Dad saw go down immediately after I started IVIG in September, 2011. But, since my surgery, I’ve had a hard time with. They’re hoping this will change again. Why? Well, (for example) for 5 hours a day for two days while at IVIG, Mom got to hear me ask about costumes, Halloween, sandwiches (at infusions I love Jimmy John’s “Slim #1” sandwich), and then back to a whole bunch of costumes. I think it’s fair to say I asked her questions every single minute – at the longest stretch. Every few seconds at my fastest. Sometimes she couldn’t get an answer out before I asked again.
These perseverations are hard for me. I can’t get around the wall of questions or worries. If I could, I might be able to get into more things, expand my interests… but as much as I try, my brain just won’t let me. This is one of the reasons Mom and Dad hope to keep the infusions going. It’s helped my language, my behavior, my perseverations and my impulses. Before the surgery, this is what we all saw give me the biggest changes. I felt like I could think clearer.
My biggest perseverations right now are around Halloween; and it’s been this way for over a month. For a while, I wanted to know if Halloween was here yet. Mom helped me understand that when all the leaves fall off of the trees, Halloween will be here. She has to remind me a lot, but now I can tell her that’s when Halloween will be here. So then, my next worry is my costume.
I’m really, really, really into Scooby Doo. The ones Mom and Dad said were around when they were growing up. I don’t want to be Scooby though. I want to be the monsters. These are some of the ones I like:
There’s other ones too. A green, one-red-eyed monster blob with worms that reach out of his mouth (at least the way I see it). There’s the ice monster that’s all pointy and icy shoots frozen water, the three headed zombie that I keep calling a two-headed zombie and some others. I guess I just like whatever specific Scooby Doo cartoon I’m repeatedly watching that day. Then, just for fun, I sometimes say I want to be a Ninja like in NinjaGo, just to confuse Mom and Dad even more.
Mom said she counted me asking the same “perseverating question” this morning over 37 times in 1 – 1.5 hours… and she thinks she lost count somewhere. I guess that’s one of the reasons they hope this IVIG infusion brings my immune system back up to a ‘normal’ balance. For whatever reason, when it’s up, I’m better.