Man never is, but always To be Blest.
Well, so much for my desire to post something each day during the month of February. Instead, it turned out to be what felt like the longest month of the year! What with the snow, and the lack of sleep. And the snow. And the lack of sleep.
Did I mention the snow? Or the lack of sleep?
Seriously, the sleep situation has gotten so bad that Nik is now barely making it through a single sleep cycle before he’s awake again. (In case you’re wondering, the average sleep cycle is roughly ninety minutes.) We use melatonin and neurontin, we’ve tried everything else we can without going to some serious psychiatric medications. But we’re not going there yet.
My money is still on the tonsils. In the last few nights, we’ve actually heard Nik struggling to breath and getting restless about fifteen minutes before he wakes in a panicked frenzy. The fact that he calms moderately quickly after waking, wants to sleep sitting up (preferably on my lap, of course!), and that his tonsils have been chronically swollen (but not infected) has finally pointed a very large arrow toward obstructive sleep apnea. No one thought of it for a long time because, frankly, Nik’s never been a snorer and, until recently, noone’s ever noticed a problem with his tonsils. [Disclaimer: Nik makes it exceedingly difficult for anyone to look in his throat; it's only been in the past six weeks or so that I've been able to get a good look while feeding him.] It makes a lot of sense; the nights his tonsils are more swollen, he wakes more often, is awake longer and is more irritable and hyper the next day.
I am amazed at my child’s resilience through all of this, though. I don’t mean to imply it hasn’t affected him —it most definitely has— but the manifestations are the opposite of what I would have expected. Where I have been struggling to string together coherent sentences for simple conversation with my husband or my mother and having what I think may be anxiety attacks, Nik seems to be functioning relatively well. He’s eating and drinking well (um, maybe not so much the drinking —we’re still using a 60 mL syringe to get fluids into him), he’s playing, he’s mostly happy and sunshiny.
Except when he’s not. Then —forget about it— Nik’s moody and irritable, tantrumy and self-injurious. Fortunately, those moments aren’t too frequent. I think the antibiotic for his latest ear infection is helping, too, to eliminate one significant source of distress.
Apparently, many children respond to obstructive sleep apnea by being very hyperactive and it’s often mistaken for ADHD. Yikes. Wouldn’t it be awesome if Nik’s tonsils are removed and he becomes my calm, steady, happy-go-lucky good sleeper again? (I’m keeping everything crossed, folks!)
We see the ENT tomorrow. I hope we don’t have a battle on our hands about getting his tonsils out but I worry that we may. It won’t be because Nik’s tonsils aren’t enlarged. Rather, there’s a question of whether Nik may have a submucosal cleft palate which would make him a potentially bad candidate for removing his tonsils. Or so we’ve been told. The hurdle we have to overcome with the doctors is the possibility of velopharyngeal dysfunction/insufficiency (VPD) resulting from removing the tonsils. Of course, current research indicates that, in some case, removing the tonsils can actually decrease the effects of VPD. The irony is that VPD has a significant impact on speech (as well as eating and swallowing). Wouldn’t it be something if my hungry little bear decided he was ready to eat more than pureed foods and was able to make more vocal sounds once his tonsils came out?
Just once, I wish it could be a simple, straightforward, black-or-white situation with Nik’s health. I’m sure he does, too.
Meanwhile, there have been some moments of sheer delight and celebration wedged in among the ear infections, the sleepless nights, and the days which leave Nik covered in self-inflicted bruises…
In addition to his recent mastery of socks, Nik has been working on dressing himself. It’s not quite to the point at which I can hand him a stack of clothing and say “Ok, sweetie, time to get dressed!” But we’re working on it; I suspect we’ll get there sooner than I think. And self feeding, too! I think we’re closer than we realize; Nik’s been doing great with a fork and pieces of banana —even some meat this week! The gloppy spoon stuff? I think I’m the obstacle here as I have a certain attachment to not having food flung all over my walls and carpet. Sigh. Nik’s definitely been expressing an intense desire to do things by and for himself lately, —complete with vigorous chest thumping and head shaking when I ask him if he needs help.
We’re also seeing some major cognitive leaps being made in OT lately, too.
Imagine, if Nik’s able to continue making such progress when he’s chronically sleep deprived and under the weather, how much more could he do if he were healthy and well rested? I hope to find out soon.