Sit down. You're going to think this is just crazy.....but Lincoln has still NOT had a seizure. Hmmm. He's in really good spirits though, which is very helpful. It's when he's down and uncomfortable (itchy, etc) that I find it hard to stay positive for him. He's a bit freaked out that he has to stay until he has a seizure. Think there's quite a sense of fear here, as he spends most of his life trying to avoid a seizure. He's not allowed Benadryl tonight because he will be taking Ritalin instead....at 10 or 11pm! Try to picture this..Ritalin is a stimulant that takes about four hours for the body to metabolize. Tonight will be a late night. Andy bought us all mochachinos (how in the world do you spell that?) to try to keep up with him ( I diluted mine - otherwise I'd go into cardiac arrest). Andy arrived this afternoon and is napping now to prepare for the long night ahead. This is so very helpful to me because at a certain point in the late night, Lincoln gets tired and asks to go to bed. If I'm tired also I don't have the strength to tell him no and keep him entertained and awake. It helps to have one of us on and the other off taking a nap, and vice versa.
I learned a little today. Lincoln doesn't have to be sleep deprived all the time, his sleep cycle needs to be screwed up. So naps are okay, and in a sense a Benadryl induced day-long slumber is okay too. I'm not looking forward to the Benadryl days because I need to stay in the room if he's sleeping, as that is most likely when he will seize. Quick trips to the cafeteria, shower or felafel's vendor
Think there are several kids here with H1N1 or Swine Flu (of course). There are big neon signs on these children's doors that read: "Droplet Precaution" and staff come out of these rooms with masks and full body aprons, gloves, etc. A bit unsettling. We have one such patient right next to us. Andy said he saw the child vomit into his face mask earlier in the day (yeah, picture that one). Tonight a female janitor came out of the room, ripped her face mask off and took a big gulp of clean air. Her face was a ghostly white. I quickly closed our door, bathed in hand sanitizer (covered L too) and made L take a whole handful of vitamins. Groooooooooss.
Because Andy's here I was able to take a good long walk around Manhattan this evening. It's raining/sleeting here and I got very wet. I still haven't made it up to see the tree yet, I'll have to get it in quick before Andy leaves tomorrow.
Thanks again to everyone who's reading this blog. Lincoln gets such a charge out of it. We haven't quite figured out how to respond back to your comments but we will. Hello to Evan who was hospitalized earlier this fall. So, so brave. And to Cousin Karen. How neat.
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