Okay, so...........here we go again with sleep study hoop-la. Our original follow-up appointment was in January, but it got bumped up to earlier this week which of course freaked me out in thinking something was awful wrong that they needed to tell us sooner. We had heard back from the GI doctor and what she said surprised us.......the apnea was definitely NOT related to the reflux, in fact - she wasn't having any more reflux than any other child her age. So, in other words, no need for expensive Prevacid (thank goodness I was being supplied by the samples at work) or dietary changes. Her reflux was not even an issue to even think about. So, the first thing that went through my head was, "thank goodness we did an MRI because if not, I'd be wetting my pants by now." Then, at the sleep study doctors they told us something surprising as well. (By the way, I am sure most of you know how much I HATE surprises) Her central apnea was no longer a concern. Sure, she was still having apnea moments, but they seem to believe that they are related to natural phenomenon.....such as coughing, sighing, etc. So, I was glad we did another study so that they could further look into that.
So what gives, right? They think that she is having disorders of arousal. Basically, she is getting too much of a period of REM sleep that is characterized by slow-wave sleep. I know, Claudia......yawn, yawn. So what does this mean? Basically, in this stage of sleep that she tends to fall in she is having a tremendous amount of parasomnias (nightmares, terrors, etc) that is causing her to cry out and awaken. This is the same phenomenon that is known to make people sleep-talk and sleep-walk. So, what do we do? Funny, the docs want to do a rigorous sleep schedule, good thing I quit my job, right!? They think that the reason she spends so much time in this particular part of her sleep is because she is soooo sleep deprived and her body is craving this deep sleep. So, if we get her on a rigorous sleeping schedule, we are hoping to avoid any deprivation so that she can get some normal sleep. Well, this is what I have wanted from the get-go. Here is the kicker, it doesn't really go away. The sleep MD that we were talking to has an 8 year old that is still suffering. So, Byron and I are thinking of robbing a bank to buy a house that has another wing in which to put her. Haha, just kidding, really. About robbing the bank. :)
They also believe she is hyper-sensitive to stimuli when sleeping which is why she awakens so often. (There you go Mandy, my OT friend) Basically, she is an incredibly light sleeper. So, once again, we are in need of another wing in which to place her. Anyone that knows of this sort of mansion that we could afford on one salary (a resident's salary might I add), let me know please!
So, here we go again. Rigorous sleep schedule, here we come. Thank goodness I've got all the time in the world to practice to make perfect!