I really despise when someone refers to River's care as being not so different than that of a typical 12 month old. With our recent attempts to get more respite care, this has come up frequently. And people that don't know the extent of River's disabilities, seem to think that all we are is a little sleep deprived. Actually the sleep is not so bad, but the sheer exhaution of always being "on" is worse.
Two weeks ago we were helplessly watching him projectile vomit, afraid that if we didn't catch it he might take a breath while vomiting, and inhale the digested formula into his lungs, not be able to clear his airway, aspirate, choke, die, whatever. Then he got a cold and was having brief episodes of difficulting breathing which made the vomiting worse. And since last week we've been on seizure patrol, finding ourselves in the emergency room on Saturday night with what I am pretty certain, but not without some doubt, that he was having seizures. They didn't look like typical convulsion-type seizures, more like shivers/chills/tremors with some abnormal eye movement and head turning. Fortunately they stopped by the time we were at the ER, but only after they had been happening for over an hour. It took me that long to determine what was going on and figure out what to do about it. We were discharged home with a sedative in case it happens again for more than seven minutes. So now we have to watch him for seizures, and time them if they do start, remember to feed him every 2 hours because that is all he is tolerating, and of course take care of all the other daily chores. Most of this falls on Julia so hopefully I'm representative of her as well.
Fortunately the EEG is in less than a week. I hope we'll have some answers then!
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