on and on

Little Lars is just in a lot of pain.

And his days & nights are fairly turned around.

He slept yesterday (Wednesday) basically during the time that he was at Perkins and at respite, and then cried all late afternoon and evening, slept for a few hours between 8 & 11, and then cried & fussed until he fell back asleep about 5:10 this morning. Andey had him most of the night, and I took the last shift here before getting ready to go to work.

I wonder if managing his pain while awake is easier when it's quiet and dark, and he has just 1:1 mom time. Dealing with pain plus the rest of the world is so exhausting that he konks out more easily during the day, perhaps.

In any case it's awful. The milk & molasses enemas don't seem to be helping. His continued weight loss concerns me more & more. He's not able to eat or drink much, though we're able to...coax...enough in to keep him officially hydrated & out of the hospital & off IVs. Barely.

I was telling a friend on the phone last night that in the same way having serious pneumonia taught me not to take breathing for granted, this is teaching me not to take pooping for granted.

Lars is such a little sweetheart that during the moments that his intestinal pain gives him reprieve, he is totally ready to be happy and interactive and to celebrate life. He'll have a couple minutes like this and then you can see the pain streak across his body again & he dissolves.

New people & new situations will distract him for longer than the old moms at this point. Tamara came over last night & held him while we did dishes & swept the floor. It was wonderful. He ended up falling asleep & we took a picture for T's Aunt Boo:
Lars' screaming is definitely getting on Joa's nerves, and our frayed nerves are not helping Joa either. I did stay up late with him last night watching national geographic video podcasts & checking out previews of current movies. A friend graciously offered to take him to a movie & pizza this weekend.

And we started reading My Life As A Furry Red Monster by Elmo's puppeteer Kevin Clash. We needed something sweet & engaging & it fits that bill. The idea of reading about the childhood of the 6-foot black man who is responsible for creating Elmo's voice & character is fascinating to Joa.

J was also completely thrilled that a friend gave him her son's old Pokémon cards and book. And his Denise brought him home again yesterday, so they got some good time together.

When we were having our final snuggle last night, he talked about how much the time with Denise, the gift of the cards & book, the promise of a movie, and the time with me "without Larsman screaming" meant to him. The kid never ceases to amaze & delight his old Mama. He naturally struggles with feeling guilty about sometimes just wanting Lars to shut the #@*&^! up.

Don't we all.