Little Lars

Davis' Farmland Summer 2010

2010-07-31T12:25:00.001-04:00

Larsman graduates

2010-07-28T20:00:00.001-04:00

Perkins School for the Blind Watertown, Massachusetts. Lars Ronald Kynvi having honorably completed the course of study for graduation is granted this Preschool Diploma from the Early Learning Center. In testimony whereof we have affixed our signatures this month of July 2010 Teacher Lea Chesney, Assist. Education Director Norma Drissel

Preschool Show: The Little Red Hen

2010-06-09T21:00:00.006-04:00

Riding

2010-06-09T19:24:00.001-04:00

♡ ツ ♡

2010-06-05T21:06:00.000-04:00

P-Town Memorial Day Weekend

2010-05-31T22:13:00.010-04:00

short pneumonia stay @ Children's

2010-03-30T21:31:00.006-04:00

Well, Lars has been inpatient at Children's Hospital Boston since Friday. Spiked a temp Wednesday evening, home sick Thursday, & by Friday morning was really not well. Went to his pediatrician who sent us to the ER & from there he was admitted with pneumonia. Some scary moments when his blood oxygen saturation levels dropped very far very rapidly, but he got oxygen & albuterol nebulizers & IV antibiotics & eventually stabilized. Hoping to go home tomorrow, Wednesday. Only lingering problem is he continues to require oxygen at night, so we're bringing it home with us. Hospital bed delivered @ home today, which will help especially with further respiratory issues. Grateful for Children's & totally looking forward to going home.

larsy leprechaun

2010-03-17T22:43:00.002-04:00

therapeutic riding

2010-03-09T20:17:00.009-05:00

Lars is the extremely lucky recipient of a full scholarship for a semester of therapeutic riding in Stoneymeade Farm's REACH program. This means that, at no cost, he gets to participate every week from March through June in horseback riding with a whole team devoted just to him during his therapy time. Riding is good for him on so many levels. I saw his core/trunk strength and posture improve just from the first week to the second. Totally amazing. And it's 5 minutes from where we live. Thank you so much to the generosity of the folks at Stoneymeade for offering this to Lars. We are so grateful! The second time he got to go, pictured here, was yesterday, his 6th birthday.

6th birthday party

2010-03-09T20:02:00.005-05:00

2010-03-05T21:40:00.007-05:00

tubing

2010-02-21T22:20:00.004-05:00

2009-12-30T22:14:00.000-05:00

2009-12-05T23:57:00.000-05:00

splish splash

2009-10-29T07:24:00.001-04:00

This morning's bath was one of the most fun ever. This on the heels of a really challenging seizure week, which Lars is now past.

Lars is 5 1/2 today!

2009-09-08T09:16:00.002-04:00

Plus it's his first day back at school. Yeah! Here he is gettin' on the school bus. Whee!!

meet Lars' snake Nate!

2009-08-12T22:55:00.005-04:00

Nate is a fabulous 9 year-old ball python who came home to us this week. We are thrilled. He has been living his whole life with a wonderful breeder & has been handled by children since birth. In fact, he was the favorite snake of the breeder's girls because he was the "nicest." Although he could live to be 40 years old, he is now of an age where they are not breeding him any more, so although he wasn't on their "for sale" list, after I sent them photos of Lars with snakes & explained my situation, they offered him to us. He has been absolutely wonderful & sweet from the moment we laid eyes on him. These photos are from yesterday, his first day home.

another Lars & Gigantor video

2009-08-12T22:51:00.000-04:00

virtual basketball!

2009-08-12T18:40:00.001-04:00

Lars the sumo pillow wrestler

2009-08-04T11:00:00.001-04:00

Mindfully Simple: Looking Out For Lisa

2009-08-02T09:40:00.004-04:00

A dear friend of ours--Lars' beloved music therapist since he was 6 months old--is raising money to help her sister pay for medical bills.

the bovine whisperer

2009-07-29T21:42:00.003-04:00

Lars and his baby calf, Gigantor
Allie & Lars at Davis Farmland in Sterling, MA, with his favorite baby calves. So sweet. The giggles!

2009-07-29T21:41:00.002-04:00

Lars and Gigantor part 2
I especially love it when Lars starts "doodle-deideling" with the calf as it licks his hand.

oh yeah

2009-07-29T21:05:00.002-04:00

Perkins summer picnic

2009-07-17T05:41:00.000-04:00

party!

2009-07-12T23:11:00.009-04:00

sweet fun @ the pond

2009-07-11T08:33:00.002-04:00

a few sweet & funny phone pix from the past week

swim time with Big Fish!

2009-07-11T08:29:00.001-04:00

BIG snake

2009-06-23T21:30:00.006-04:00

Davis' farmland

2009-06-20T10:50:00.004-04:00

fun @ the mall

2009-06-19T11:37:00.006-04:00

It's been raining a lot here. A lot. Lars & Mariele had a grand time running, twirling & smelling perfume @ the Lord & Taylor counter. Larsy learned how to hug! Here he is giving Kylene a big hug. The boy sure knows how to endear himself.

Pride!

2009-06-14T23:09:00.000-04:00

phone pix

2009-05-10T22:17:00.003-04:00

just to prove you wrong, mama...

2009-04-14T15:19:00.006-04:00

Gotta love that 5 year-old sense of defiance. Larsy ate cheese, sausage, goldfish & some cheese puffs today, went looking (with his hands) for more cheese in the container, and also drank from a new sippy cup, all with his buddy Allie. Lars almost never drinks. And holding a cup? Are you kidding me? Who is this kid?

hmmm...

2009-04-14T12:38:00.003-04:00

Well....I can't really report that Lars is still eating significant amounts of food. It seems to have come and gone like the wind, like the little word approximations he has that show up & then take their leave, like his time without a runny nose- here & then gone again. Sigh. Keeps us knowing what is possible, at least for fleeting periods of time.

Sir Larsalot actually tested positive for strep & is now on day two of a 10-day course on amoxicillin. He's been happy as the champ he is, though.

eating. i mean REALLY EATING

2009-03-15T20:01:00.006-04:00

Today is the 1st day in over 2 years Lars hasn't been fed through his g-tube because he ATE ENOUGH FOOD through his MOUTH! Pardon me if I SHOUT! This is HUGE! Yep, turned the big 5 years old & decided pediasure pumped into the belly was OUT & eating was IN. Top favorite foods: coconut shrimp, buffalo chicken w/bleu cheese, and cheese puffs. Today he also ate grahm crackers with peanut butter, lots of chunks of ham & cheese, & drank a few sips of cranberry juice. He's been eating cottage cheese, too.

We owe this giant leap forward to his PCA Allie. She is the person who originally got him to eat, like back when he was little ;-). Let me explain. When Allie was I think 17 she started as a volunteer in the Infant-Toddler program at Perkins. In that program, volunteers are usually assigned to a particular child, and they stay with him/her for as long as possible. In our case, Lars' first day at Infant-Toddler was also Allie's first day. He was 5 months old. She was his 1:1 volunteer basically almost the whole time until he turned 3 & graduated to preschool.

When Allie first met Lars, he was just nursing. A week after he turned 1, he weaned himself (much to my dismay). That spring, Allie got him to start eating solid food (which he had been refusing) with chocolate pudding! For quite a while, he would only eat with her. Then he gradually spread the joy & ate with others too. In fact, he was a great eater (though not a great self-feeder) until his major pain episode / hospitalization in winter-spring of 2007. He started on the drug neurontin & while it cured his pain episodes, it also robbed him of his hunger. On 2/21/07 he surgically had a g-tube placed, and since that time has gotten almost all of his nutrition via pediasure & water pumped into his belly through the tube. Also all his meds.

Since then he's been eating a few bites here & there: sour cream, kefir & rice krispies, veggie chips, plain yogurt (nothing sweet), but nothing to write home about.

So this week, just a couple days after turning 5, Allie took him to the 99 (a restaurant), ordered him coconut shrimp & buffalo chicken with bleu cheese, and that first day he ate 4 jumbo shrimp & 2 whole chicken strips! The next day at school he had a 45 minute lunch, eating a couple more chicken strips. YEE-HAW! So far, as in the very beginning, he's eating way more with Allie than with anyone else. Andey had the boys this weekend, but she & Joa had some kind of plans, so Allie had Lars all afternoon- hence the day with no pediasure. I'm just so very excited & grateful!

I don't have a picture of the new eating craze yet, but here are Lars & Allie doing the other thing they do best: chillin.

sweet little birthday party

2009-03-09T22:49:00.004-04:00

Happy Birthday, Lars!

2009-03-08T10:15:00.002-04:00

Big birthday boy happy & giggly this morning, even before ibuprofen for that ankle. Yeah!

Wrote this for his IEP, but it so applies for his life & what I wish for him on his 5th birthday & beyond: I hope Lars’ experience continues to be one in which he is engaged and engaging; where he feels joy in belonging and contributing to his environment; and where, through meaningful experiences and relationships, he develops an ever deeper sense of himself and his place in this human community.

Happy birthday, Lars. I am so incredibly proud of you.

Lars in hair gel...

2009-03-07T21:57:00.005-05:00

sprained ankle

2009-03-07T09:54:00.000-05:00

took at little tumble at school...has a mildly sprained ankle...

mesmerized

2009-03-07T06:51:00.001-05:00

by new silicon bumpy

IEP

2009-03-05T05:52:00.002-05:00

Lars' IEP (Individualized Education Plan) meeting yesterday went very well. His Perkins team is extraordinary in every way, and did an absolutely beautiful job. The town has agreed to extending his days at school until 2:30, so that should start within a couple weeks. Mama is happy! Onward.

updates

2009-03-01T13:50:00.004-05:00

Haven't written about the bone scan results because I don't have them all. I placed several calls to ortho & received a message saying the good news was no stress fractures. I called back & said I would also like to hear about the hip bone & how things are going with its formation, etc. I'll call again this week.

In other Lars-related news, he's doing better at school with tolerating circle time. We've come up with some strategies like getting him time out of his wheelchair & lying down stretching before circle, sitting in his "long sitter" at circle, etc. He's loving PT & roughhousing; used to fuss through PT, but no more.

IEP meeting is this Wednesday. I went through the whole thing with his teacher last week, and have every reason to believe the meeting will go well, and that Lars will soon transition into full days at school. He's ready, and generally the 3 & 4 year-olds go 8:30 - 12:30 and the 5 & 6 year-olds go 8:30 - 2:30. Fingers crossed.

almost 5

2009-02-28T13:44:00.006-05:00

It's been a bit of a rough spat. Thursday after the bone scan, Lars had 3 major seizures, 2 in the bathtub. It was difficult to keep him safe; body movements were strong & took him over onto his side in the water. Then Sunday he had his biggest seizure day ever with 12 seizures, all between 40 seconds and 2 minutes. Really intense day followed by a GI bug, which he's been very chipper through, but the gory details are, indeed, gory. Last night I changed him 8 times & gave him 2 baths in the middle of the night, extra-vigilant because this stuff is so nasty that it eats through skin quickly & I don't want him to get a terrible rash.

But, as I said, in spite of it all he's been generally happy & had a good week. He'll be 5 a week from tomorrow. Check out the new haircut: Donna @ Salon Paradiso in Natick.

goin' to the mall

2009-02-28T13:22:00.002-05:00

Good thing Lars has his 20-something PCA friends to take him to the mall to experience goodies like hadbags & chair massagers. This is Allie & Lars at the mall this week.

after the bone scan

2009-02-17T21:56:00.010-05:00

It was fairly rough at times, but we made it through & Lars feels much better now that he can have food in his belly again. We don't know when we'll get results, but I'll call tomorrow.

dem bones

2009-02-15T13:47:00.017-05:00

Lars went for x-rays of his hips a couple weeks ago. We're trying to get a sense of why he's such a flamingo, holding that left leg up and not wanting to bear weight on it.

The thought has been that it's about tight muscles in his calves and thighs, which he certainly has, but also at play seems to be a hip issue. As I understand it, walking and weight-bearing are part of what help your hip bones form and grow and change properly with time. Since he's not doing those things, particularly on the left, he is becoming increasingly at risk for hip displacement. I'm also wondering if some of his crying is due to bone pain.

This Tuesday--assuming he's well enough & the current nasty cold has cleared enough--he'll have a sedated bone scan, skeletal scintigraphy. This is a fairly non-invasive nuclear medicine test that shows exquisite anatomical detail, and also bone metabolism, giving a functional image of the bones, showing how the cells are actually performing—normally or abnormally, and to what degree.

We go in at 10:30 & they injects a radiotracer directly into a vein. The radiotracer is a compound made of a radioactive isotope & a pharmaceutical agent that bones absorb like calcium. We wait 3-4 hours while the radioactive isotope releases energy, and then they do the sedation & a 1-2 hour scan with a "gamma camera." The images show areas where too much or too little of the radiotracer has been absorbed, indicating irregular cell function.

Indicators of a bone scan are: stress fractures, shin splints, arthritis, Paget's disease, bone tumors, infection of the joints or bones, fibrous dysplasia, avascular necrosis or impaired bone blood supply. They say it can be helpful to evaluate damage to the bones due to trauma, bone infection, abnormal growth patterns, or other causes of unexplained bone pain. It will help determine whether he will need surgery to correct the way the left hip bones are growing.

Since next week is school vacation, my fingers are crossed that we can get it done then. This past week he got sick at school Tuesday, and missed most of Tuesday & all of Wednesday.

happy valentine's day

2009-02-14T23:59:00.000-05:00

help me out here

2009-01-21T11:29:00.002-05:00

Okay, so Lars has been teething. Cutting these big giant six-year molars. He's never been a great teether, and these are no exception. Seems like they've been coming in for months and we're not done. They change his whole system, he gets fevers, drools, is in lots of pain, pink cheeks, red ears, etc., and most of all he gets intermittent pain and intense grumpiness. That's what I think has been going on the last few days. Monday & Tuesday he melted down at school, essentially presented as sick, I got called in, and he got sent home early. This morning I didn't even send him in. But then after he's gone from school--usually already on the ride home--he stops crying, chills out and is happy-as-a-clam boy with tons of energy, smiles, etc.

Okay, that said he also seems to have developed somewhat of a...shall we say dislike for being asked to work, at home or at school. It is my opinion that for some time he has been connecting the dots between whine/complain and get out of work. It's been a fine line to walk between pushing him to do a little more while reassuring / distracting / encouraging / singing or whatever it takes....and him tripping over that line and landing splat in I am utterly miserable and can't get myself out of it mode. I think his time in severe pain a couple years ago laid down and paved for him not only a neuro pathway for pain, but a superhighway that's like a wind tunnel, and any travels close to that highway suck him right into it. Once he's there, it's awfully difficult to locate and successfully take an exit ramp.

So the current question is has Mr. Cause-&-Effect now comprehended a larger cause & effect loop than he'd previously understood? Can he now pull I'm so sad my teeth hurt and if I melt down enough and pitch enough of a fit Mama or Michelle Sharpe or Allie will come pick me up and I'll get out of work?? Am I underestimating him to even question that he could get that? And if he is doing that, what am I going to do about it? How to know when he's actually sick? How to pay bills when I can't go to, or stay at, work? School can't be expected to deal with a screaming miserable boy who can't participate in the program. But I can't just come get him when he doesn't feel like working. I've had several conversations with him about it, but alas, our receptive vocabulary just isn't quite there....

O wise friends, what do you think?

so ready for Obamanation

2009-01-19T20:10:00.004-05:00

2009-01-18T21:56:00.015-05:00

Lars' fruit & veggie adventures of the day.

2009-01-18T21:33:00.004-05:00

ice day, sick day...

2009-01-08T07:19:00.002-05:00

We were home yesterday with ice cancellations, and now lilman has 102° fever & is totally miserable. So sad. Big tears.

2009-01-05T22:17:00.001-05:00

Lars & his buddy Sofia, who is one trimester older than he. They've always just been so sweet together.

forgot to knock on wood?

2009-01-05T22:02:00.003-05:00

Literally the day I thought to myself, "wow, Lars made it through the whole winter break without seizures," he ended up having a major seizure day yesterday, with four. Rats. I'd unfortunately also been thinking how great it was that we'd had so much ice, but yet I hadn't heard of anyone taking a terrible fall. I really should be surrounded by wood upon which to knock: Andey fell this morning and had to get staples in her head. Ouch.

On a lighter note, Joa had a great sax lesson with Kathleen, he and I spent a car ride tonight trying to say "unique new york" over & over & laughing ourselves silly, and he's going snowboarding for the first time tomorrow @ Wachusett, with his school, and is way excited "except for the part about falling over backwards." Yeah, well there's that...

shoe shopping with Allie

2009-01-03T12:32:00.006-05:00

Lars' buddies

2009-01-03T12:11:00.000-05:00

Our church has a committee called the BRE Committee, which stands for "Belonging is a Religious Experience." It helps make church, religious education, and all church-related activities accessible for children and adults with special needs, and provides support for the families of these folks. In our case that has meant that Lars has had a buddy with him every week for the 11:00 service so that I can go to church and not worry about him, and this semester it has also meant that he's had another buddy with him for the 9:15 service because I was teaching Sunday school. That's a huge commitment. I wish I had pics of all the buddies, but here are Jan & Emily: and wait- I know that hand! It's Ginger!

phone pix

2009-01-03T11:52:00.000-05:00

this morning

2008-12-20T11:21:00.000-05:00

let it snow!

2008-12-20T11:20:00.001-05:00

Send your own ElfYourself eCards

an evening

2008-11-03T23:03:00.006-05:00

it's a bird...

2008-11-02T16:29:00.011-05:00

it's a plane... it's... Larsman!! or is that Snuggleman? the buttons form a capital "L" in braille

2008-11-01T21:24:00.000-04:00

You may recall Larsy got a buzz cut back in the beginning of May. His hair has not been even trimmed since then (soon!) I just love the curls he still has right after a bath

proud to be amazing

2008-10-10T04:20:00.000-04:00

Emily: enjoy!

h2o

2008-10-10T04:12:00.001-04:00

Be Like Water:
run deep
run clear
fill any space to its own dimensions  
respond to the moon,
to gravity
 change colors with the light  
hold your temperature longer than the surrounding air
take the coast by storm
go under ground  
bend light  
be the one thing people need, even when they're
 fasting
 eat boulders,
quietly
 be a universal solvent
-Kendra Ford

to remember

2008-09-27T14:46:00.012-04:00

Found this poem & instantly liked it. Among other reasons, the end reminds of one of the many gifts Lars brings us: the guy knows how to lay back gently & float, letting the world support him. Such a beautiful thing.

A Kol Nidrei by Mark Belletini

Let’s set it all down, you and me. 
The disappointments.
 Little and large.
 The frustrations.
 Let’s open our fists and drop them. 
The useless waiting.
 The obsession with what we cannot have.
 The focus on foolish things.
 The pin-wheeling worry which wears us out.
 The fretting.
 Let’s throw them down. 

The comparisons of ourselves with others.
 The competition, as if Domination 
was the best name we could give to God.
 The cynical assumptions.
 The unspoken, shelved anger.
 Let’s toss them.
 The inarticulate suspicions.
 The self-doubt. 
The pre-emptive self-dumping.
 The numbing bouts of self-pity.
 Let’s sink them all like stones.

 Like stones in the pool of this gift of silence.
 Let’s drop them like hot rocks
 into the cool silence.
 And when they’re gone, 
let’s lay back gently, and float,
 float on the calm surface of the silence.
 Let’s be supported in this still cradle
 of the world, new-born, ready for anything.

standin'

2008-09-10T12:24:00.003-04:00

How Lars was standing before the recent mishap with his leg...which, by the way, is getting better slowly. He's moving it on his own now, but is still guarding it closely.

2008-09-07T22:34:00.004-04:00

It's been a while since we've had pics like these on the blog, eh? Larsy landed himself in the hospital today with--get this, are you ready?--a common little boy-type injury sustained on a playground. Yippee! I love it.

Well, we don't even really know if that was the cause, but it seems he took a little tumble off a swing on the church playground & pulled a muscle or tendon or ligament or something in his left leg. It did take a 7-hour children's hospital ER visit to rule out any fracture or break, or infection, dislocation, or water retention. But, we have the green light to assume that it's a pulled sumthin' from his little playground tumble. Perfect. Give him motrin & let him rest the leg. Sweet.

camping trip to Ricker pond (7th annual)

2008-09-01T00:15:00.005-04:00

new chair

2008-08-30T11:13:00.004-04:00

Okay, it's been a way long time since I've updated & a way too busy summer. I'll try to catch y'all up a bit. For starters, here is Lars in his new wheelchair that he got yesterday. It's great. He'll ride to school on the bus starting Tuesday in his chair.

so much going on

2008-06-30T21:47:00.005-04:00

Sorry for the lack of news--it's not for a lack of news, that's for sure. Managed to get the ash street house on the market--no small feat--and sold, twice. First buyers backed out after I signed an apartment lease & paid deposit & rent, but the very next day after I put the house back on the market, I had two more offers. Ended up selling to friends, so that's wonderful. It was a tense 24 hours realizing I was legally responsible for 2 houses & an apartment.

Will try to post more soon. Here's a sweet pic from this weekend at Michele's. Larsy decided that in her arms was the best place to go to sleep, and off he went....zzzzzzzz.....

star of stage and screen

2008-06-11T23:16:00.001-04:00

Some of you may recall last year's fantastic Perkins preschool play in which Lars played one of the 3 little pigs. Well, this year, he got to be the 4th billy goat in the Three Billy Goats Gruff: the musical. Fantastic, the kids & staff were just great, and the music was perfect. Michele & I had a wonderful time attending the performance. And to think Lars almost missed it because he's had the stomach flu recently. In spite of missing dress rehearsal, they let him perform in the show anyway. Whew.

Larsy even had a "speaking" part, which he performed brilliantly by hitting his step-by-step switch, a voice output device with a recorded message that plays back when you push it.

memorial day weekend & the kayaks came out

2008-05-27T23:40:00.009-04:00

I was in Nebraska most of the weekend at the funeral of a dear friend and mentor, but we managed to find kayaking time at Michele's pond after all. What a beautiful weekend it was, though bittersweet.

Mothers' Day

2008-05-11T22:26:00.016-04:00

At church & at the Garden in the Woods. Lovely day!

yipee

2008-05-10T21:19:00.007-04:00

So happy to have outdoor hammock swing & warm weather back.

catchin' up

2008-05-06T20:23:00.007-04:00

Okay, I've undergone some serious harassment from Little Lars Blog fans for how remiss I've been in the update department. My apologies. Lots & lots going on here. I'm going to start catching up with some photos from tonight of Lars sportin' his new haircut. Don't think I'll buzz it again, but it's fun to see him looking so big boy-like. I miss his blonde curls. They'll grow back. I hope.

Lars' new coat

2008-03-29T18:45:00.010-04:00

Lars has a little obsession with chewing on zippers--to the extent that he breaks them & little pieces end up... disappearing, probably into his belly. Not so good. I mentioned to his godmother Lisa that it's been difficult to find winter coats without zippers & she promptly solved the problem by hiring someone to make this wonderful little coat for Lars! It's perfect & will last him probably two more winters. The sleeves roll up for now or down (as they were this morning) when it's cold & windy outside. And doesn't the boy just look cute as a button with the yellow & red toggles? We love it.

new car seat

2008-03-26T21:00:00.017-04:00

Insurance bought us a special needs car seat, and a bunch of friends & family got together for Lars' birthday & bought another one that can stay securely installed in the van instead of getting unbuckled & rebuckled all the time traveling back & forth to school on the bus. What an incredible gift! Thank you sooo much, one & all.

eeg off

2008-03-26T20:42:00.012-04:00

Happy, happy boy has a free head for the first time in six days. Our fabulous eagle-eyed Perkins dream team spotted what they think were one or two seizures & got them marked. Hopefully we'll have some information in a couple weeks. For now we're just feeling how wonderful it is to carry him without all the leads, head wrapping, backpack with computer, etc.

still EEG'in

2008-03-25T21:17:00.003-04:00

Lars' eeg that started Friday is still on, the battery having been recharged at Children's hospital on Monday. Little guy is not necessarily too happy about having his head all wrapped up for going on six days now. Slept absolutely horribly Friday, Saturday & Sunday nights when I had him. Yikes was I exhausted. Sunday night I got a wopping 2 hours of sleep & that was interrupted 3 times. Really restless & then up at 1:30 a.m. Huh? He was with Andey last night & she reported more restlessness, but also more overall sleep.

A friend at school described him as "a cute little ali-baba today all wrapped up." He is cute, you gotta give him that. I've got some pictures I'll try to post soon of the roving eeg boy.

I mentioned that he had his first "normal" EEG. What that means is that the background rhythm of his brain waves has matured and normalized from something chaotic and irregular to something that's regular enough to fit within normal limits for his age. It doesn't mean he's not having seizures. What Lars' epileptologist wanted to know is whether what we see that we think are seizures--eyes roll to the side, maybe a hand moves, seems unresponsive--are actual clinical seizures or just neuro-events-Lars-checking-out events. We have been giving him diastat and sending him home from school, for example, when he has what qualifies as a 'cluster' of these kinds of seizures. We want to know whether they actually are or not. So they're leaving the EEG on longer in hopes that we catch one, can mark it by pushing the button, and then they can go back and check out the recording of that time.

It's a funny thing to wish for seizures, but it would be nice if he would have a couple of what we're thinking are seizures so we can check them out. He had a maybe-event at school yesterday.... Michelle is taking him back to Children's today after school to either get the battery recharged again, or to get the whole thing off.

eeg

2008-03-19T23:59:00.007-04:00

Lars' eeg from a week & a half ago--the one that was normal. I still can't get over that. 4-day eeg starts Friday & he wears it until Monday...an "ambulatory eeg." Sure we'll get pics of that, too. (If you click on the little text bubble in the lower left corner of the slide show, you get the captions.)

are you sitting down?

2008-03-18T22:54:00.005-04:00

Spoke with Lars' epileptologist tonight & the EEG Lars had done a week & a day ago was his first normal EEG ever. Ever.

Of course he's been having what we think are seizures every couple weeks--four today at school before I picked him up for inconsolable crying & turning blue--but at least when he's not seizing he's grown into a somewhat regular brain rhythm. Woah. Mind blowing.

Lars' doc wants to do a 48-hour test to look for seizure activity, or what we think is seizure activity, so that we can determine if it is or not. Lars had to be wrapped up like a burrito for this EEG so he wouldn't pull the leads out; first time they've done that. Michelle & I took lots of pictures & will post them shortly, as soon as we get done having the ^%$#@&* stomach flu that Lars had last week. Luckily Andey hasn't had it over at her place, and Joa only got a very mild version.

Tomorrow's Lars' big IEP meeting at Perkins; I baked apple cake for the event. I'm so domestic.

stomach flu & weird al

2008-03-14T19:03:00.012-04:00

Lars had the stomach flu this week. Too much partying Saturday, I guess. Had to stay home from school Wed, Thur., & Friday & miss the big trip to the Children's Museum with his class today :-(

Well, at least we had fun music Friday--a regular feature at our house--and Lars discovered a new song he loves: Weird Al's Amish Paradise! He started laughing as soon as it came on & just kept laughing:

Lars' 4th Birthday!!

2008-03-12T05:16:00.006-04:00

We had a pajama party with 32 friends on Saturday morning. It was great fun! Hopefully this slide show will work... Lots of great photos there, courtesy of Denise (& a few by Monica). (If the slideshow is crazy & sideways, just hit the "reload" button & it should fix it.)

Sledding!

2008-02-13T11:20:00.000-05:00

This are from awhile ago, but we had to share them. Espeically given today's weather. Boy did I love being pulled in the sled! Except for the time it tipped over and I ended up face down in the snow.

beautiful boy

2008-01-14T08:03:00.000-05:00

Michelle's mom knit Larsy this sweet scarf. Thank you so much!

stud muffin

2008-01-13T19:58:00.000-05:00

Who is the cutest little stud muffin ever? In his new shirt that Michelle won for him. Handsome, handsome.

munch the bat

2008-01-13T19:55:00.001-05:00

Lars' dear Michelle got him one of his new favorite toys: the bat. Woah is it a wonderful thing on which to chew. Wings are often soaking wet. We love bat.

snuggle buddies

2008-01-13T19:11:00.001-05:00

Lars, taking after his ol' mama, remains one of the snuggliest snugglers around. Here he is with Janet & Monica.

2008-01-12T20:45:00.000-05:00

Happy Holidays!

2008-01-05T10:06:00.000-05:00

Hey there, it's me Lars! Thought I would share a picture of Mama playing MY new toy. We both really like it. Then there are some cute ones of me. Who doesn't need cute Lars pictures on a regular basis?

snow snow snow

2007-12-13T16:10:00.000-05:00

Larsy left Perkins at 12:30 & isn't home yet. It's 4:10. Roads are really really bad & it took me 2 hours to get home from Worcester, but this is ridiculous. We've been in contact with the van & they say they're inching along. Sigh.

p.s. Lars got home about five minutes after I posted the above. Such a long ride.

a growin' boy

2007-12-12T14:49:00.000-05:00

Lars has grown 8 cm and gained 5 pounds since June. He measured today at 108 cm, that's 42 1/2 inches, which is 3 1/2 feet + a 1/2 inch. He's 40 pounds.

Here's a link to the car seat we're trying to get insurance to pay for. The little prince'll be ridin' in style.

Thanksgiving

2007-11-26T05:44:00.000-05:00

Lars had a wonderful Thanksgiving, with Cary, John, Tucker & Zane here from Vermont from Wednesday to Friday, and Mommy visiting every day. Lots of sound & energy & music & wonderful smells, and although he didn't partake in dinner at the time, he has enjoyed some leftovers.

Spent Mama's birthday with Lars' Godparents Lisa & John & their birthday boy Griffin, and friend Rocky. Quite lovely. Next morning visited Denise & Kali & went with Kali to the Mapparium. Wow, what a place! If you haven't been there, it's a three-story, stained glass globe in the Mary Baker Eddy Library, in what's known as the "Mother Church"- the huge Christian Science church downtown Boston. It's stunning visually,

but for Lars the acoustic properties were of course more interesting. Glass completely reflects sound. If two people stand at each end of the 30-foot bridge, with their backs toward each other, they can whisper to each other and be heard as if they were standing side by side. And if you stand in the very middle and make sound, it reflects back to you from every direction. It's quite amazing. (No photography allowed inside, so I nabbed those photos off their website.)

Note from last Wednesday in Lars' preschool book: "Lars beat the conga today on his own!! Very exciting--we had a blast. He needed repeated guiding to find the drum--but once he did he beat with both hands repeatedly! Yahoo! Jill" Wheee & yeah for music therapy. Lars is so blessed to be able to work with Jill.

Could definitely tell this was Lars' first fall out of the house & with other kids: he got one sickness after another, with no breaks in between. Happily (knock on wood) he's been well for several weeks now. I was gone for six days at a conference the week before last, and Lars & I had an incredibly joyful reunion when I returned. Having never been away from him, that was challenging. And wonderful. Michelle & Andey took extra good care of him, and of course he had his fantastic Perkins Preschool crew. Reports are he mostly did well, although a bit grumpy and out-of-sorts toward the end.

Here's to staying well through the holiday season. Cheers.

more trampoline

2007-11-23T15:38:00.001-05:00

trampoline arrives

2007-11-11T20:07:00.001-05:00

Several weeks ago we got a 14' trampoline for free from the local freecycle network! It happened to be a neighbor giving it away. I wish I had photos of us seven adults carrying it down Mechanic Street, around the corner and up Ash street. We stopped traffic. The boys both absolutely love it.

apple picking...feeling...frolicking...

2007-11-11T19:30:00.001-05:00

Nice leaves, smooth apples.
Great hills to roll down, too.

Halloween

2007-11-10T21:24:00.000-05:00

Lars had a fever & couldn't go out, but was still the cutest little skeleton in town. And jolly, too. Joa as bat-biting Ozzy Osbourne. For his school halloween dance, he died his hair black, too. Mommy dons the wig Joa rejected.

2007-11-01T23:31:00.001-04:00

missing Halloween :(

2007-10-31T07:02:00.000-04:00

Little Larsy is sick. Still? Again? Hard to tell. He had a touch of pneumonia, went on a 10-day round of anti-biotics, and then right when he got off he spiked a fever & threw up 15 times in a night (Saturday night). He's been home from school all week, and last night was up to 104°. I got it down to 100° with tylenol & a cool bath. We'll see how he feels today.

It's very sad to miss Halloween @ Perkins! Such a sensory experience. Sigh.