Yesterday we got some of the most fabulous news. Simon's Sleep Safe Bed was approved! We should have it in a few weeks! Right now Simon sleeps, and I use sleep lightly, in a cheap, low to the ground trundle that is rigged with blankets, stuffed animals, side rails and prayers that he doesn't fall out. For a non-ambulatory child, Simon is very mobile. We have been lucky. More importantly, he needs to sleep more upright and on the left to prevent his reflux and sleep apnea. Its impossible to keep him in any position, but I hope this bed will be the solution we're hoping for.
Simon has C-Diff right now and there is a strong chance that he is hurting still, but man, he just doesn't want to sleep. He actually seems lonely to me. He'll whine and its not his "I'm in pain" whine, its just a "Hey, I'm not happy" whine. It stops when we get to him. I brought him in our room and that seemed to work for awhile, then he was mad again. He can't have Melatonin because it has alcohol in it and that interferes with his Flagyl. I can't say with a lot of confidence that it ever really worked anyway. None of the other sleep aides ever worked either. He has actually slept a little though so I'll hang on to that blessing; but I'm old and tired and I really like sleep.
I always try to concentrate on our blessings. Some days are tougher than others, but in the end life is really good. Its so easy to get caught up in the hard stuff and believe me I've had weeks where everything felt like they were just going wrong. I've had my funks, but I think its important to pull everything within you to make sure you don't let yourself slip into that negative thinking for too long. It just tires you out and it just spirals down. Every single day there is at least one thing to be thankful for; more than likely several things. Look for those and you'll never be sorry.
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