Neighborhood Watch

Lately Micah has spent a lot of time looking out the windows of his bedroom (he has three windows in three directions, all about 8 inches from the floor, so it's handy). The problem is that he should be sleeping. He continues to be a great sleeper--usually about 12 hours straight at night. But occasionally he will wake up about an hour after going to bed and want to spend some time looking outside. We'll hear him get out of bed through the monitor, and when we go up to put him back into bed, he's kneeling on the floor and looking out at the neighborhood. He likes to watch the cars drive past, and look at the streetlights. Sometimes it's one window and sometimes another. He's not fussy, or upset. He's just not sleeping. Fortunately it doesn't happen every night and he is so sweet and cuddly and happy to see us when we go up to put him back into bed. That hour-long "nap" just seems to make bed seem redundant.

Today was not a good day, seizure-wise. We increased his ketogenic ratio to 3.5:1, up from 3:1, on Friday afternoon, so we have been hoping to see an improvement. But it hasn't come yet. We will be doing this new ratio for at least two weeks before we know whether it will work or not, so I'm trying to be patient. Then we'll try 4:1. But days like today are just demoralizing--Micah had the highest seizure and cluster totals (by quite a bit) that we have seen so far. GRRR!

David's parents are here visiting and it has been great to have them spend some time with us. Micah has been over the moon! He always wants to know "where's Grandpa?" It has been helpful to have him distracted, and David and I enjoyed a lovely meal at Kelly Jae's last night while they babysat (actually, Micah was asleep the whole time we were gone, so it wasn't too strenuous). So we are trying to take care of ourselves, too.

Micah continues to eat well, for which we are grateful. Still, we are hoping and praying for a better day tomorrow.