Sunday, January 13, 2013

Dax vid, long overdue

A boy update before they're in college

I do believe I’ve become a quarterly blogger. Remember when I used to blog once a week? Yeah, me either. It was a long ago time when I had one kid that didn’t move much and one still just giving me indigestion. Now they both move so much… And still give me indigestion.
 I used to read other people’s blogs, also. I find there’s no time for that anymore, either. So if you’ve noticed I never comment on your blog posts anymore it’s not because I’m not interested or I don’t care… I’m just out of touch with anything that doesn’t directly involve my kids, job, Sesame Street, Leap Frog, or sleep. So, for my blogosphere friends, and my real life friends, I apologize!
 So, guess what?! Ladies and gentlemen, we have progress. On all fronts. It’s a beautiful thing.
Let’s start with me because, well, frankly, I don’t really matter so we’ll get me out of the way early and move on to the important stuff. I got pretty sick again in December and probably should have gone back to the hospital, but… well… ain’t nobody got time for that. Per some suggestions from some medical friends I looked into celiac disease and went gluten-free just to see and, poof, I am better! I’m not 100% sure it’s celiac disease, possibly just a gluten intolerance of sorts, and possibly all a product of sensitivities from using Splenda (which I absolutely cannot use anymore, so I’ve discovered.) I’ve done some treatment reversals (because I’m a behavior analyst and I like good data) and there is definitely a relationship between gluten and my tummy woes so, for now, I’ll try to keep the gluten out… Which is extremely hard as some of you know… Gluten is a sneaky little whore who hides away in the most unsuspecting of foods. She’s the James Bond of proteins, I swear.
 But enough about me.
On to my TyTy. At last report we had just gotten an autism diagnosis for Tyler and the enormity of that was still sinking in a bit. I’m pretty much over it now and I’m absolutely certain he is a genius and the mayor of TylerTown. I got him in to see Dax’s neuro and was prepared to have a talk about possibly trying a stimulant for Tyler’s hyperactivity. If you’ve met me, you know I pretty much know what I want going in and tell the doctor what it is that I want, how I want it, and when it will start, and I was totally okay (after much internal battling) to try a low dose of Vyvanse. While the doc was evaluating him and I had not yet told him my feelings, the doctor says “Take a minute while I am interacting with him to think about how you feel about medications.” Oh, yeah, please, like I was coming in open-minded. Please. I already have my answer formulated in my head. I know everything, doc, geez. Don’t you know that yet?
 So, he finishes playing with Tyler and says, “Sometimes these kids have a really hard time accessing the world because they can’t get out of their own little worlds. Sometimes medication can help them get into our worlds.” Well, duh, that’s exactly what I was thinking.
“I think we should try him on a low dose of a medication,” he says. Well, duh. I knew you would say that. 
“I totally agree with you. I’m willing to try a lose dose of Vyvanse for his hyperactivity,” I say.
 “Not a stimulant. An SSRI. Zoloft.”
 And at that point the whole conversation I had worked out in my imagination exploded and a piano fell on my head. We talked a bit, I agreed to try a few other things first, and I left with a scrip for a low dose of Zoloft for Ty’s “OCD tendencies.” I had absolutely no intention of having it filled.
 Fast forward a couple of months, and, after much deliberation I decided to give it a shot. Worst case scenario I could just take him off it, right? But he is doing AMAZING. After about two weeks he seemed to be noticing things he hadn’t noticed before. After about four weeks he began identifying random items and using language to request items more frequently. I just followed up with the neuro this week, and the best way I can describe it is like before he lived in TylerLand all the time, with occasional trips to our world. Now he lives on the outskirts of our world with occasional trips to TylerLand. His personality is the same, but he’s happier, his affect is brighter, and he’s present with us so much more. He’s working on potty training and following instructions and imitating language and picking up on routines he hadn’t noticed before.
That makes for a pretty awesome Christmas present.
As for Daximus Maximus, he is (knocking on wood as I type) really stable right now. 2012 was such a good year for him health-wise! He still thinks it’s fun to scare me at night from time to time, but it’s more like “someone grabbed me from behind and said ‘BOO!’” scary rather than the “someone is chasing me through the house with a chainsaw” scary at which Dax has been historically so damn good.
 Oh, and quick story. Dax had a vocal cord plumping procedure completed on Thursday. I pretty much figured we were screwed when I drove into the parking garage with my NPO toddler and got a good parking space. I knew at that moment that they were probably going to amputate the wrong leg, if you get my drift. I couldn’t have been more wrong. We had the best OR experience we’ve ever had, complete with meeting great people in the waiting room, great pre-and post-op nursing care, and anesthesiologist who was formerly a pediatrician who was amazed and awed at how wonderfully my little 23-weeker is doing. She changed up the normal anesthesia routine and Dax made it through without being intubated, without emergence delirium, and with only a tiny bit of oxygen need before going home. It was great.
 Equally exciting, for the first time Dax was able to process he could not eat or drink until after the procedure. Not an easy task for any kid with an afternoon surgery, but at 2:30, after being completely NPO since 8AM, Dax was saying, “Surgery first, then milk,” and I’d confirm, then he’d say “I want surgery, please.” What a trooper.
At any rate, his language has taken off, his balance and coordination are improving, his appetite is down-right disgusting at times, and he’s absorbing everything. Weight-gain sucks, but he’s getting taller, expressive language still sucks, but it’s better, and potty training will probably NEVER EVER HAPPEN. Ever.
 And that’s the end of my update. I’m sure there’s more, but my brain is shut off for the night. I’ll try to post some pics soon. These boys are growing like fungus. On weeds. On crack.