the nice part,

if there is such a thing, about this virus is seeing how, even with high fevers, Lars still clearly knows who we are & is extremely responsive to us, comforted by our presence, immanently connected. That is certainly not the case when he is experiencing neurological pain; then most of the time he doesn't seem to know whether we're there or not, and it's nearly impossible to comfort him. We stick by him & try to give him the feeling that he is held & loved. That's about all we can do then.

105.4°

Yikes, that is one hot boy. Tough night, so sick. Frequently woke screaming. Currently drifting in & out. Basic 3-year-old with a high fever.

request for Joa

Joa & I are gathering ideas for how Joa could handle anticipated upcoming encounters of various types, specifically what he could say when:

1. kids say mean things about Lars;

2. kids say mean things about people with cognitive impairments in general (i.e. "retard" & "retarded" used in pejorative way) & Joa feels hurt;

3. kids ask questions about Lars in a way that feels hurtful to Joa (i.e. "What's wrong with your brother?" "[insert incredulous tone] What do you mean he can't walk/talk/see?" "Is he stupid or something?");

4. he meets new kids at summer camp & they don't know about his brother.

There are added layers of "what do I say about my two moms & lack of dad, about my school & why I'm not in a 'grade,' about my long hair/when people think I'm a girl..."

If you have ideas about any of these, please either click the "comments" link below this post, or email them to joa at kynvi dot com &/or mama at kynvi dot com. The important part right now is that they come from people other than just Joa's parents. ;-) And Thanks.

upset stomach

Lars & I arrived home @ 4:15 this morning. Andey spent this afternoon trying to feed Lars, then cleaning up after he threw up, then trying to feed him again.

Joa & I had much more fun hangin' with Suzie & visiting the natick community organic farm. Joa says, "that was way fun; I had a great afternoon." Me too.

outa here

Labs look okay. Just nasty virus. Supposed to come back if temp goes way up again, or if he's not better in 2-3 days. Okey dokey.

night owls

Chest x-ray showed lots of "viral stuff," but no pneumonia. Strep was negative. Waiting now on nasal, urine & blood cultures. Underwent lots of pokes & prods, 2 x-rays, urine catheter, 2 tries on IV, and water then tube with suction way up the nose. The latter was by far the worst, according to sir Larsalot, but was rivaled by the strep throat swab. Music helped a lot.

I forgot the shirt would read backwards on this in-computer camera...but you get the idea. Larsy already did a number chewing on his IV tube, so I turned him on to the yummy blanket.

Was asleep earlier; wide awake now.

waiting in the ER

Sweet, sweet ER doc says Alice was right, there is a different quality to his breathing in his lower lobes. "A chest x-ray certainly seems warranted." And they're going to do blood work. His room-air O2 sat was only 93%. Not so good...

on our way to Children's ER

Went to the doc today & got stuck with dr. pompous pontification (we've run into him before, subbing for Richie Cunningham; he told us 'go home & feed him prunes; he'll be fine' back when it took 3 solid days in-patient to get him un-impacted), who pooh-poohed my request for a chest x-ray after listening to Lars' lungs for, oh, less than 2 seconds.

Saw Alice for cranial & she thought his lower left lobe was of some concern. Called CCS this afternoon & they really want him to come in to the ER for blood & urine cultures, and a chest x-ray. Decided to go to Griffin's for Andey's birthday dinner & dinosaur cake first. Had a great time until Lars threw up all over Andey (happy birthday, mommy). Changed him & now he & I are on our way to children's. Andey & Joa heading home to sleep. Great part is the T-shirt we had to change him into was one he got for his birthday. Black with a white stick figure, falling down, says, "I do all my own stunts."

The ER staff should appreciate that.

105.1°

Rough night. Fever got up to 105.1°. Lots of gagging. Called Richie Cunningham (pediatrician) in the middle of the night; going in for chest x-ray today.

Lars is remarkably cheerful through all this, wiggling & cooing & making wonderful sounds even as he shakes. He says "Heck this fever stuff's nuthin' compared with what I felt in Dec, Jan, Feb, & half of March."

hoarse coughing

Fever's down a bit, lots of hoarse coughing, some leading to vomit.

Three cheers, once again, for the g-tube. Hydration, nutrition, & ventilation can make a huge difference. Like the difference between staying home & being in the hospital. Hip-hip-hooray.

Andey's birthday tomorrow; Joa & I spent all evening on a 12-minute podcast we made for her. What fun we had.

fever's still up

Lars' fever is still up, but he's really feeling pretty well in spite of it. Not missing much in terms of outside time 'cause the weather's so miserable, and he's probably thrilled to postpone today's dentist visit.

Have to admit to being cavalier; dare say I'm almost delighted it's something measurable, typical, short-term...

104.3°

Yup, Larsy has a fever & cough last night & this morning. He rarely gets viruses, but is handling it okay with tylenol on board. Joa's also not feeling well.

There's been daily water in the basement for the last month; Andey's been vacuuming, mopping, putting towels down & spinning them several times a day. Today it's as bad as it's been since the 5" a while back.

I have to be gone from about noon on, taking Lars' glasses in for repair, then teaching, then a meeting after class. If anyone's in the area & wants to stop by to hold Lars while Andey does another round on the basement water this afternoon or evening, she'd appreciate it.

Hope you locals are enjoying the snow. I think this is our third day in a row with snow that turns to rain. The last bits of snow in our yard melted after Easter; this stuff isn't sticking. Ah, April.

boyz pics, including the white tux

fingertip game:

just peachy

Lars had a basically fantastic weekend. Played & explored, open to new people, interactive & charming, sweet & happy... A bit of a fuss Saturday afternoon & last night was rough, but otherwise he's been feeling great. Couldn't ask for more. Decreased his vigabatrin on Friday instead of Wednesday, so expected a rough weekend & got the opposite. Perhaps a decrease every 9 or 10 days works better than weekly?

Or perhaps fussing was really about the wrong school placement & the toll it took. Tuesday was his only significant visit at town preschool last week. Slept great Monday night, ate well & was in a perfect, alert mood when I took him in Tuesday. Within moments of entering the classroom, he started a mighty fuss & within 20 minutes was sound asleep. I guess when your feet can't take you out the door, that's the other way to get out of an uncomfortable situation.

Perkins visits scheduled next week; Tuesday at our house, and he'll go in Thursday. If if if everything goes well, as expected, maybe maybe maybe he'll start school on Beltane. I love Beltane; what a great day to begin.

Lars is eating more; yesterday he skipped 2 of 3 g-tube feeds. Friday I took him to Children's for a replacement g-tube port; chewed it up one too many times. Weighed in at 37 1/2 pounds, which is great. (Had been at 35 & dropped to 30.) Visited CBT & her sweet dogs. Lars absolutely loved Oebe-sue. Snickers, too, but Oebe-sue made her presence very known & felt; Lars was belly laughing for half an hour.

Wish I could have videotaped him brushing his teeth last night. About the sweetest thing I've seen.

Went to friend Tessa's birthday party yesterday. Had a great time; only thing that upset him was feeling the hands of a 4-month-old. Don't think he's felt hands smaller than his before; he was quite upset & shook by the experience. Somehow it was just wrong.

Speaking of wrong, several of you have (correctly, I think) suggested that part of what's going on with Lars is that he's 3. Since 2001 (when Joa was 3), I've insisted 3 is significantly more difficult than 2. Some things ("Nothing is right because it's not supposed to be unless whatever is exactly RIGHT" and "He thinks he gets to tantrum now that he's 3") we do right on schedule. I can handle that. Hey, after this weekend I'm cocky enough to think I can handle all sorts of things. Something so wonderful about having several days and nights through which I feel entirely adequate to meet all of Lars' needs. Ah, relish, relish.

AND...we got to go hear Bobby McFerrin at Symphony Hall Saturday night. Talk about "Music washes away from the soul the dust of everyday life" (Art Blakely)... Wow.