breakfast

Michael's Run

Lars, Joa & I participated in Michael's Run, a benefit run for the Michael Carter Lisnow respite center in Hopkinton that Lars attends. It was great fun. And, as a bonus, remember the wonderful man who took Lars rollerblading? Well, he and his daughter Julia (middle photo) showed up to see Lars off at the race; they live in Hopkinton!

Here are some photos from the day. Joa made the whole 5K walk! Lars did too, sleeping in his stroller.

Lars & Mama's day with Elmo

So I got to make music with Elmo, Cookie Monster, "Jenny the Music Teacher," 35 preschoolers, 50 elders, 9 music therapy interns & numerous others yesterday morning! This is from the press release:
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"E" is for Everyone!!
Great Photo Opportunity Tomorrow!

WHAT: Everyone can make music, even when you don't have an instrument! Please join us tomorrow at the Notre Dame Long Term Care Center for an Intergenerational Music Therapy Session involving residents of Notre Dame, students from the Guild of St. Agnes Granite Street Preschool, and some very special friends from Sesame Street Live. Music therapists Lisa Kynvi and Chie Furukawa and their Anna Maria College music therapy student-assistants will use expressive songs and instruments to bridge the gap between the youngest and oldest generations of our community with a little help from Elmo, Cookie Monster and Jenny of Sesame Street Live!
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We had lots of fun--so much so that I decided I had to take Lars to Sesame Street Live at the DCU Center last night. We were at the 7:00 show, and he loved it! Lars was most excited when Elmo was on stage (he knows & loves Elmo's voice the best). It was very sweet to watch him listen to about the first half of each new song, and then join in with "da da da" or some nice gargle sounds for the rest of the song--always in the key they were singing in! Lars was so excited, in fact, that he didn't settle down and go to sleep until way after midnight, and then was awake every 15-20 minutes all night, even though he wasn't having visible seizure activity.

Lars goes rollerblading

Joa & Gannon were invited to a friend's birthday party yesterday at Roller Kingdom & by a couple of flukes--Andey sleeping, Joa feeling sensitive--Lars & I ended up being there. Last time he was there, Lars was very upset & cried the whole time, but this time he loved it. We were having a grand time & I was watching a dad-aged gentleman who was by far the best & most graceful skater on the rink. I wished out loud in front of Tamara that Lars could feel what it's like to glide around the rink with him, and she promptly said, "I'm going to ask him if he'll do it." After clearing it with management, he gladly accepted and held Lars while doing about ten laps around. Lars LOVED it, as you can imagine. The beautiful skater gentleman's daughters subsequently fell in love with Lars & essentially played with him the rest of our time there.... I kept humming one of Lars' theme songs that pops into my head with regularity: "That is why all the girls in town follow you all around. Just like me, they long to be close to you."

lunch date

Lars & his buddy Tamara

zzz

Sweet little Lars was WIDE awake last night from 12:30 - 5:15 a.m. Happy as a clam, screeching with delight, and wide awake. About 3:30 I thought I was going to loose it. But this morning he worked pretty hard in PT and made it all the way through Music Together class happily. Go figure.

1st day back at Perkins

Lars had a great day his first day back at Perkins. He goes on Tuesday mornings. He stayed awake the whole way there, and all the way through the group, worked with Suzie and Allie, had group music therapy with Jill, and went apple picking with the group. We at lunch at the lower school & then had fun playing on the playground @ preschool. He's totally into the little slide & learned today how to scoot himself so that he would go down. Does it count as his first step toward independent mobility??

sunday school

Feeling much better, Little Lars went to his first sunday school preschool class at our UU church in Framingham today. He had a great time!! He has 1:1 support there with 3 amazing and generous women from the BRE committee, our special needs religious education committee, who take turns accompanying him to sunday school. When I showed up after teaching Joa's class, Lars was hanging out on the swings with his shades on looking way cool. 3 other kids in his class belong to friends of ours, so it's a very sweet experience. Tomorrow's a big day with taking Joa to his first day of school, PT (physical therapy) at 9:15, Music Together at 10:30, then going with the moms to see a whole bunch of houses for sale, then a hair cut (about time!) at 5:00, then a 9/11 commemorative service at 7:00.

days like today

It's days like today when I think I really can't keep saying, "he's such a happy boy." He has a day like today about once every week or two, when he's basically deeply sorrowful and 80% inconsolable 80% of the night and day. We're supposed to know what's wrong and we have no clue. With exactly the right combination of singing and holding and rocking and nuzzling he just might reach homeostasis for a short while, but anything can throw it. Anything.

Lars' new friend Meredith

Big news at the Kynvi house is that by some miraculous act of grace, Meredith walked into our lives yesterday and accepted the position of Lars' main Thursday connection. If I had to sit down and design the perfect person to hang out with Lars (aside from moms, of course), I couldn't have done better than Meredith. He turned on the charm and won her heart in mere minutes, and we couldn't be happier.

highchair

Lars in his Little Room

The Little Room is a fantastic learning environment designed by Danish psychologist and vision educator Lilli Nielsen. It's amazing & Lars loves it! His was purchased for him by Grandma, Mormor, and his Godparents Lisa & John. It's the only place he can really play independently.

loves the water!

visit to Oregon in July

Lars & his Godmother Lisa

Lars & Big Brother Joa

Lars & Mama

Lars on his second birthday 3/8/06

Lars asleep @ Joa's 8th birthday party

9/5/06

I thought I'd make a little place where it's easier to keep up with news on Lars & Joa than our old website. It desperately needs to be updated, but I just don't have the time right now!

Lars is just about to turn 2 1/2. He's still sitting pretty well independently, but also still likes to lower himself (slowly) down, and then he can't get back up. No independent mobility yet. Lots of wonderful sounds, and no names for anything. Around 31 pounds, and pushing 3'3".

Suzie, Lars' fabulous vision teacher, was here today. They worked in his yellow cube chair & with the table, working on reaching out to feel and examine toys, turn switches on. Is he responding when we hold various things up by his ears? Is he looking? That first time he reached right out and hit the yellow switch, but after that very spotty. Then worked with him and the shopping cart, trying to get him to take a step or two. He was happy and worked well for her.

Speech therapy came at 5:30--we woke him from a nap: not happy! Grumpy, whining about everything except just rocking.

Joa & Gannon played outside almost all day; it was so beautiful! Trying to get the house ready to sell. Got the dining room moved back to the dining room. Looks good.