Wednesday, June 25, 2014

The perfect un-perfect storm

I'll start with a Sammy funny from yesterday!

Sammy (as he stuffs a gummy worm into his mouth): Sometimes I like candy and sometimes I don't like candy.
Me: Really?! When do you not like candy?
S: On Tuesdays. 
Me: Well today is Tuesday.
S: Oh. Except today. Just on other Tuesdays.

Elijah could use prayer right now. There are a handful of factors at play (lots of summer activity and being overwhelmed by lack of schedule, sleep issues, anxiety, weaning off meds), all feeding off one another and creating quite the "perfect" storm in his mind/body. Things feel very overwhelming and complicated at the moment. Here's a small but complicated piece of our daily routine, as an example: Potty issues have regressed in a huge way recently. Elijah uses the toilet independently 0% of the time. If we don't tell him to go to the bathroom, he holds everything in until an accident occurs. Lately he has been super anxious and his tics have been worse than ever, so his body is constantly tense which doesn't help potty issues. I have been putting him to bed extra EXTRA early because here is what happens at night.. Ten to fifteen minutes after he is in bed and his body finally relaxes a bit, he poops. But he doesn't tell me, so I have to check on him every few minutes because he will not fall asleep until he is cleaned up. Once I clean him up, he will fall asleep. This is at least a 30-minute ordeal. And it has been happening every single night.

We almost have him completely weaned off the "sleep" meds. We actually have an appointment with the sleep doctor tomorrow. Please pray for miraculous insight/help!

My gut tells me that we need to get sleep and anxiety under control first. We have a pretty good handle on what he needs on the NLD front. We need to get him to a more rested/peaceful place and go from there with NLD strategies.

Someone asked about E's upcoming surgery and what that will entail. The surgeon will check for cholesteatoma regrowth and remove it, if necessary. He will also place a prosthesis inside his ear with the hope of restoring hearing. I'm not sure how exactly the "wiring" will go, and the doctor didn't seem entirely sure, either. It'll be a play-it-by-ear kind of situation. Ha!

Super exciting things are coming up in the next few weeks (surgery excluded)! Will share soon!

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