I'm on drugs!

Well. I'm feeling quite a bit different today. I started feeling better last night while playing D&D minis. At first it was very bad. I was in Games of Berkeley, staring at the new minis that had come in, and thinking "This won't give me any pleasure. I might as well not buy them." But then I thought I'd feel stupid hanging out with everyone who was enjoying the new minis if I didn't have any of my own. So I bought some and played a game. I lost, but it was a good game and it got me feeling normal, like myself again. I also had a good conversation with my friend Paul, who was kind enough to check up on me after reading my "blanket of lead" post.

This morning Quinn is going back to school, having recovered sufficiently from his eye boogers (with the help of antibiotic drops) that he should no longer be eye booger contagious. I also took my first half dose (25 mg) of Sertraline, the generic version of Zoloft, this morning. (Holy fucking shit: in 2007, almost 30 million people in the United States were on this drug. That's like 10% of the country.) It may be all in my head, but I'm definitely feeling some effects: there's an overall hyperness and jitteryness (it could be the cup of coffee), a lack of introspection, some slight tingling on the pinky side of my right hand. Rather weird, I must say. I'm certainly not feeling like a blanket of lead or frustrated, which is nice. But I don't think my writing is as good, either. I have the urge to write very simple, straightforward, declarative sentences, devoid of poetic ornamentation. Of course, maybe that will make my writing better.

Not looking forward to the possible negative sexual side effects, but depression has definite negative sexual side effects so I guess that's a risk I'm willing to take. I'm utterly convinced that that previous sentence would have been written better were I not on this drug. This is very strange: it feels like my Internal Monologue is queiter, that I'm more directly connected to the outside world. It feels like I'm out of my head a bit, which is very unusual for me.

Well, the whole point of this is to be able to get more work done, so off I go...

Blanket o' Lead

It seems my rage and anxiety over Quinn's cold and the amount of time I have to spend caring for him has given way to a dull, gray, dead feeling. It's like a blanket of lead has fallen over everything. Quinn wont be able to go to school tomorrow. He's got boogers coming out of his eyes and needs antibiotic drops for 24 hours before he can go back. I'll have to spend most of another day taking care of him. I'm not pissed. I'm just sort of reacting like how I imagine a stupid cow might react: Slowly, not really caring much about anything. It's sort of a hopeless, resigned feeling. Like my body is going into autopilot or semi-hibernation until this shit is over. (But when will that be? Never.) I can feel my reaction time blunting: when my senses receive a new stimulus, my first reaction isn't "What was that?" but more "Oh God, should I even bother?" This really isn't like me. I can still "pass", and with effort carry on phone conversations, do uncomplicated household tasks, do all the Quinn stuff, and fulfill the daily routines of life. But it sort of feels like I'm operating myself by remote control. And that I'm not a particularly fun toy to operate. Again, feelings do come through. But they're strangely muted. It's just too much effort to get worked up about anything.

I'm seeing a doctor tomorrow morning. Or rather, a physician's assistant. Let's see what modern pharmacology has to offer.

Happy news alert!

So despite Quinn's having been sick this week and missing three days of school, it's been a great several days:

1. Except for the couple of days when he was feeling really icky, he's been sleeping through the night for over a week! "Through the night" ends at 5 am (or sometimes 4:45 just for kicks), but it is a heck of a lot better than waking up again and again all night, or listening to two+ hours of crib gymnastics at 2 am. If we time it just right, we can sneak him into our bed at the sound of the first murmur and get an extra half hour of sleep. It's pretty awesome. We are living a shiny new less sleep-deprived life, albeit a life that requires us to be in bed by 10 pm if we are going to get 6-7 hours of shut-eye. Oh please, please let this last. I like being a sane individual.
2. He makes the "more" sign and even said "Mmmoohh" at least once. We usually see "more" when Zac is singing to Quinn (i.e. more singing). But hopefully soon he will figure out how to get "more" of everything in his little world. He's also made the signs for "open" and "all done", though not as consistently.
3. He is doing some cute mimicking stuff. For example, after grocery shopping one day, I gave him the empty reusable bag he likes to play with and he started to put things from around the kitchen in it - including play food, so I think he was "shopping".

I've left the shopping bag just where he left it, full of play food, farm animal magnets, and bags of ramen because it fills me with joy just to see it there. It seems like he is waking up to the world. I am relieved and delighted to watch the process unfold.

Ear Tubes

Double-posting today with a quick ear tube update. The ear tube procedure yesterday went very well. We arrived at 6:30 am, sat around for a longish while trying to prevent our slightly irritable, fasting child from boarding the elevators or pulling a garbage can onto himself, and finally got called in for surgery prep. They talked to us a lot about the anesthesia and post-surgery guidelines, had us dress Quinn in some nifty hospital pajamas, and then it all began. We stayed with him while they put him out. That was a creepy thing to watch. They restrained ("hugged" in the doctor's words) him, put the mask on his face, he struggled a little, and rapidly fell asleep. This was a creepier anesthesia experience than we had for the MRI, because for that procedure, they gave him an oral sedative and a little flashlight toy to play with. It worked much more slowly, and with the toy, he looked like a teenager at a rave, which added some comic relief to the experience.

Anyway, after he fell asleep, they sent us away. We went down to the lobby to get coffee to go, and a few minutes after we sat down with our coffee in the post-op waiting room, the doctor told us the procedure was done. About ten minutes later our little guy was awake. He was cranky and cuddly. Once they made sure his vitals were all normal, he was discharged, around 8:30 am. At home he insisted on eating great quantities of food even though he was supposed to take it easy to prevent post-anesthesia nausea. By mid-afternoon, it was impossible to get him to "rest" as was recommended in the discharge instructions. He was HAPPY and wanted to play, play, play.

So all went well. It's too soon to say if this has had any effect on his sleep, hearing, number of ear infections, or speech development, but he was full of joy all afternoon yesterday, and all day today. More updates to come after further observation. Thanks for the positive thoughts, everyone!

Ugh: Ear infections, negative ear pressure, antibiotics

OK, here's a fun little sample of life with a fragile X child: One of the symptoms of Fragile X is low muscle tone. This has all kinds of implications: delayed motor skills, delayed vocalization (your voice is controlled by muscles, though it's not clear how much of the delay is due to cognitive deficits and how much is due to muscle tone issues), and more ear infections.

Why would low muscle tone cause more ear infections? Well, it turns out that the tube that connects your ear to your nose (so pressure can be equalized) is opened and closed by some very small muscles. Those muscles have the same low tone problem that other muscles do. So that passage isn't opened or closed as well as it ought to be, and that means it's easier for bacteria to get a foothold in there.

And more ear infections means more diarrhea. Why is that? Because the antibiotics prescribed to kill the bacteria that cause the ear infections also kill the ecosystem in the large intestine, causing diarrhea, diaper rash, crying, stress at his school, parental sleeplessness, relationship stress, etc.

Quinn just got back from the audiologist (another 3 hour chunk out of our workdays, this one taken valiantly by my wife), and after two ten-day courses of antibiotics, still has fluid in his ears and negative ear drum pressure. This means he probably needs tubes in is ears (small tubes that put a hole in his eardrum that allow the pressure to equalize and the fluid to drain). This will probably be a big relief to Quinn, because it should lessen his ear annoyance. Indeed, we've heard anecdotal evidence that this can improve sleep issues dramatically. But it means surgery, general anesthesia, a raft of bills, possibly a round of dealing with the insurance company, more missed work, etc.

Oh, and he has to go back to the audiologist in 3 months because they can't do their experiments when he has fluid in his ears. Add another 3 hours of daytime occupation to one of our calendars.

Is all parenting like this?