painful day, but not for Lars

Lars had a great day. I didn't.

It was incredibly painful for me to sign "I accept the placement" on Lars' IEP this morning. I tried to find some place in me convinced this is an appropriate placement. Wasn't able to do that, so the process was of signing that I accept what I know to be wrong for my son.

I didn't think I had the time or space to deal with my feelings, as I was getting ready for work, but my body laughed at me: "Oh yeah?" said she. "You want to try to pretend that wasn't painful? I'll show you how painful that was."

By the middle of the day I was lying on the floor at work with a blanket & pillow kindly brought in by my supervisor, shades drawn, trying just to get through the worst of the migraine. A colleague drove me home & I went to bed all afternoon. Still now some pain, feel hung over, but can at least tolerate low light & low noise, & focus my eyes.

Who am I to think that might not have happened?

Next visit to the school, with kids this time, is tomorrow morning at 9:00. We'll both be there with Lars.

Fabulous photos Denise took @ Lar's b-day party are now posted below on the party blog entry . So sweet.

well...

Larsman had a great day yesterday. Both of us got fantastic haircuts from our one-&-only Donna (Changing Faces in Natick). Has his first medical acupuncture appointment this morning @ 10 with an acupuncturist/MD Andey & I know from ten years ago when we worked @ the Center for Holistic Pediatric Education & Research @ children's. Came out here from Stanford to work with the pain service & stayed. Fantastic guy & insurance coverage.

Andey & Lars go visit town school today, after kids leave. I'll be at work. Don't know what's happening come Monday with no TVI.

I feel physically really awful. One of the worst headaches I've ever had. Comes with nausea & sensitivity to light & sound. Think I really need to go to work anyway, for a variety of reasons. Am I nuts?

school update

Crazy stuff happening with school, which is supposed to start Monday. No TVI (teacher of students with visual impairments) in place, town implying it's our fault. Not.

He's not starting there without a TVI. They really really don't have a program for him without a TVI.

Feeling confused & slimed. Wrote more on lkeducation.blogspot.com You have to sign in with a google account to read that blog. If you want to be added as reader or author, just let me know.

graduation day

It's Lars' last day at Perkins Infant-Toddler Tuesday group. Graduation day.
Many mixed feelings.

what a great party

We had a fantastic birthday party, thanks to Lisa, Griffin, Julia, Margaret, Mary-Carla, Roch, Isabelle, Katherine, Denise, Kali, Alice, Danny, Hanna, Garth, Henry, Nell, Cindy, Donna, Gabriella, Michelle, Aubrey, Tamara, Gannon, Carylbeth, Erika, & Molly. (Hope I remembered everyone...) Others, too, who wrote & sent birthday wishes, wanted to come. Thank you all so very much. Major gratitude to Denise for the gorgeous photos.

During the party, Lars hung out with lots of different people & mostly did great- a little fussy at times, but quick recoveries. He was completely charming all evening after people left, eating a lot & singing. This morning & early afternoon he took a well-timed long nap in the hammock swing while we cleaned the house, cleared snow & ice, & frosted the cake.

Since Thursday Lars' days have been mostly happy & playful, but with terrible nights. Tonight will be my fourth consecutive & I'm tired & numb. Last night we "slept" for five hours, and during that time he woke up 19 times crying, requiring intervention. At one point he was up for a couple hours. Hoping it's just the cold he's had.. Tired is why I haven't written. Keep falling asleep with laptop on lap.

Like now. I'd better hit "publish" & go to bed.

Here are two photos from Lars' actual birth day, March 8th 2004.
These are from long ago when I was keeping kynvi.com up. Haven't figured out how to transfer it to Mac, so it died with our PC...

And a couple from about 2 weeks old:

the pendulum swingeth

Lars has spent Tuesday, Wednesday, & Thursday alternating between unable to stay awake, crashing headlong into pain, sobbing, and feeling okay-ish. The nights have been particularly brutal, with long inconsolable sobbing spells. I don't think it's as bad as the same situation would have been before the neurontin, venting, and g-tube. At least he's alternating & not screaming for eleven hours straight like he once did. Actually right now he's happily playing in his little room.

Lots of folks thought "Cruella DeVille" probably referred to a new doctor, & were pleasantly surprised at the happy musical content. Have to say I'm thrilled not to have named a doctor after Cruella. Yet.

Andey's been rearranging furniture & working wonders here on ash street. Such a sweet little house; suits us well. Looking forward to the end of mud season.

Had fun in the Worcestr St. Patrick's Day parade on Sunday. We were there with Mercy Centre, the special needs school where I've worked for six years.

They've been incredibly wonderful & understanding through all our trials, and are astoundingly strong supporters of & believers in music therapy.

Cruella deVille

Went through a couple of rough hours this evening, and after Lars came out the other side we were listening to random songs on his ipod. Cruella deVille came on. Lars had never heard it & he immediately started laughing. We played it over & over & he continued to get a huge kick out of it, singing along & laughing. I don't think he'd ever heard ragtime piano before. I have a bunch of Scott Joplin, but it's all on vinal.

I recorded some of Lars singing with Cruella, for your listening pleasure. What a funny boy.

such an amazing boy

Lars is still feeling great. Incredible. A few rough hours here & there, the last couple nights were rotten, but overall feeling so much better. Neurontin + venting + steady hydration & nutrition? This morning he tolerated being scrubbed by BigGrandmaHelpful & then was pleased as punch to be playing with Suzie, who knows him oh-so-well & plays Just Exactly Right, according to Sir Larsalot. Suzie came bearing gifts so wonderful he's been playing with them ever since.

One is a couple of round shakers connected with braided string. I've seen them called simpatika knockers or seed shakers, though Lars' are a wonderful textured wood, not seeds. Here he is today sitting & playing with them:

In case you missed that, they're both a big deal these days:
sitting
and
playing.

Other gifts handmade especially for him & involve the bath section of home depot: rings & elastic & suction. Extraordinarily cool. Suzie says his hand skills have improved; he's working on his pincer, hands are more open & he's using both of them more. Even after all his hospital experiences with hand trauma via IVs. He's been playing in his little room again, too, and doing some good eating, a little self-feeding, and some supported standing.

While I'm still afraid the other shoe will drop & Lars'll be back in pain, I'm thoroughly enjoying having my happy, interactive, snugly guy back. Learned recently to put his arms around a neck & give a proper hug. Heart-melting.

Now that I can, I've been falling apart a bit. Last week was all about sleep. Sleep was at the forefront of my mind, which is not typical of me, even when I'm exhausted.

Oh, bad times (hopefully short) have come again. Gotta go-