snow snow snow

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

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

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

trampoline arrives

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...

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

Halloween

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.

missing Halloween :(

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.

trade-off

Such an intense trade-off: eating and drinking for feeling good. Woah.

Really seems to me that the neurontin--which by all accounts appears to be what soothed Lars' terrible pain from last winter & has kept it at bay--has almost completely erased his appetite, desire to eat, willingness to allow food & drink past his lips... This morning he had explosive diarrhea and threw up all his meds (I think the amoxicillin is getting to him), and even in the wake of that I tried & tried to get him to drink a little sip of water to clear his mouth of all that nastiness. No go. Nothing. He eats a few bites a week, here & there. Some weeks he drinks some sips, others nothing.

This is a boy who used to love to eat. And drink.

But this is also a boy who used to scream for hours and days and weeks on end, and now he's happy.

feeling better

Larsy is feeling better. He even went back to school today, and ran a 3 hour feed with not one gag. His communication book from school said, "Lars had a pretty good day back at school." He was certainly happy to be headed that way this morning, and totally and completely exhausted by 6:30 tonight, sweet little pumpkin mine.

We're all having an early bedtime tonight. Zzzzzzzz.

pneumonia

Yikes it's been a long time since I've posted. I'll work backwards. Lars was diagnosed this afternoon with pneumonia. He's pretty spunky for a guy with pneumonia, and both Dr. Richie Cunningham and Lars' wonderful PT Alice said they heard the rattle, but it's not too extensive at this point. He's on amoxicillin 3x/day for 10 days. He's never had pneumonia before & it's a bit freaky for me because I get so dreadfully sick with pneumonia. Hopefully he didn't inherit that from me. He threw up four times this morning, so he stayed home from school. Little Richie is thinking the stomach stuff is because of the pneumonia. He's getting pedialyte via g-tube instead of pediasure now.

He's been sick off & on for a couple weeks now, little munchkin, and his gagging has radically increased. We were running his g-tube feedings at 200 ml/hr when he was awake, and now we're running between 50 & 70 when he's awake, otherwise he'll gag & throw up. Big difference. I'm really hoping the antibiotics just clear things up & we can move on. He'll be home from school again tomorrow.

I'll get around to photos later, but we had fun this past Sunday going apple...searching. We didn't get to pick them because we arrived a few minutes after they stopped selling the bag to purchase them, but we sought them out & felt the leaves & rolled down the hill (Joa with his body & Lars in his jogging stroller) & had a bunch of fun.

What have the other highlights been from the past few weeks? Hmmm... Definitely kayaking the night before and the night of the full Harvest Moon- that was totally amazing.

Well, and the major reason I haven't posted is that Andey has told me she wants a separation/divorce, and I've been having a LOT of feelings that aren't necessarily appropriate for me to post here. We are currently working with a mediator who is very skilled, and trying to work out arrangements. I am doing everything I can to make sure the kids can stay in one house (Ash Street) and have us trade off. Everyone I've ever talked to who is an adult whose parents divorced said the worst part is going from place to place and not feeling like you fully belong in either place, or that either place is really yours. Some of your stuff is one place, and other stuff isn't & the kids experience this as very stressful. Besides, it's the adults who can handle inconvenience better, and who are the cause of the inconvenience, so we should be the ones who take it on. My opinion.

We don't have any answers yet, but are in the process. It's very sad.

3-party weekend & Happy Autumnal Equinox

Autumnal Equinox, Mabon, is today. Mama's time of year has arrived. Aaaahhh.....red, orange, russet, yellow.....maroon, brown, gold, auburn.....wine, gourds, pine cones, acorns.....apples, pomegranates, seeds, corn.....honeysuckle, marigold, milkweed, sage.....nuts, potatoes, carrots, onions.....protection, prosperity, security, self-confidence..... Busy weekend. Saturday Lars & I went to a friend's 3rd birthday party in Lawrence (can't wait to get copies of the photos to post-- adorable). They decorated straw hats & had a tea party. Lars actually fussed a great deal, feeling sometimes out of sorts. Today brought a great hike in Wakefield for Mama's friend's 39th birthday, followed by hands-down the best ice cream I've ever had at Richardson's in Middleton.Then off to Watertown for Joa's friend's 12th birthday party consisting of outdoor laser tag. Way fun.

1 of 2 field trips

Silly Lars slept through his entire school day Friday, basically. Leftover tiredness from all the seizures Thursday? Who knows. At least he got to go to Davis' Farmland in the afternoon. It was goat day @ Davis'- Changing Lars & sprinkled animal food around him so the baby goats came over to munch it up & in the process made Lars laugh hysterically walking across his belly to get at the food on the other side. Sleeping through school field trip reminds me of the amazing Three Little Pigs show Lars was in at the end of summer school (July 27). It was fantastic. We all went to see it. Yes, Lars slept through it (looking like the most adorable little piggy you've ever seen in your life), but the play for him wasn't about the performance, it was about every single time he & his friends & teachers got together and practiced, about doing something together with them, about knowing he had a part.I had been noticing him making a bbbbbbb sound by blowing air between his lips more than usual, and when I joined him he would giggle. And wouldn't you know it, that was the huff-&-puff-&-bbblllloooowwww-your-house-down sound. They had a fan that they wheeled around when it was time to blow, they all knocked on, or felt, the tactile doors that the staff had made, recorded sounds on step-by-steps- it was absolutely fantastic. Every student had a part that fit him/her just right. Lars was the little piggy who made his house out of brick, so I guess he could afford to nap, safe & snug inside.

Joa's 1st day of school

September 10, 2007

Interictal

Lars seems to be his regular sweet angelic happy self this morning. Let's hope this interictal phase is longer than the last.

clusters

Today Larsy had his second major seizure cluster in as many weeks, both at preschool. Last week was the first time he had to get diastat, which for Lars is prescribed for a seizure lasting longer than 3 minutes, or if he has 3 or more shorter seizures within a half-hour. Last week I left work and picked him up. This morning at school he had seven seizures, including four after the diastat, and Andey picked him up.

Last week his timing was excellent, as he was already scheduled to see his epileptologist the next morning, so we got a depakote (primary seizure med) level drawn. Doc decided to maintain depakote dose & watch him; today we decided to increase it from 9 capsules a day to 10 and see how he does with that.

Lars felt okay through the whole ordeal, and maintained his good spirits. He may have been buoyed, as I was, from the beautiful kayak ride he, Joa, Michelle & I took the night before--big beautiful lake, setting sun, peaceful & quiet. Lars just loves being in the boat. Oh, did I tell you? An anonymous friend (thank you eternally, anonymous) donated money for half a used kayak, and I sold my Martin acoustic-electric guitar & got the money for the other half & we now have a fabulous tandem kayak. Can scoot the seats back & forth in the boat & use it as a single, too. I'm so thrilled-- got totally hooked on kayaking this summer & this makes every body of water accessible. So exciting.

nose wiping

Ah, Mama's behind on blogging again. I'll blame it on busy @ work, 2 1/2-day workshop Thur-Fri-Sat, & serious upcoming changes in our family situation.

Let me just say now that while Lars & I just had a 99% sweet & wonderful morning, I completely spoiled it at the end with the dreaded nose wiping.

I warn him, I let him feel the wipey, I sing a little song about it, I touch the nose area gently with my fingers first to try to desensitize it, I wipe gingerly, I apologize profusely...nothing seems to touch the trauma that is nose wiping. 15 verses of Wheels on the Bus while rocking in his favorite chair & nuzzling barely lessened the sting.

Why? Why is nose wiping such a big deal? Am I really supposed to let the crusty stuff sit there? Should I sneak in while he's asleep? No. I know. I just wipe the nose as respectfully as possible & deal with the fallout.

I don't get to see Lars again today awake, so why did I chose the last ten minutes before getting on the bus to assault the nose?

It was there.

Shana Tovah

nasty cold

Lars has had a nasty cold all weekend, and although he's fairly cheerful about it in the daytime, he's crying a lot at night, nose is gushing & sleep comes sitting up in someone's arms, preferably rocking, but not lying down much. Tired mama. Also his favorite way of calming himself down, nuzzling, is obsolete when he can't breathe through his nose.

Poor little zeeskayt has to stay home from school today : ( He wailed when I told him : ( this morning. Has gotten used to the idea now. Hopefully it'll be just one day.

We're grateful for the cooler weather. Hello autumn.

Happy Half-Birthday to Lars

Today Lars is 3 1/2.
Yee haw. I put a little age counter at the bottom of this web page so I can always know just how old he is without taxing my tired brain.

Weighed in at 39.4 pounds yesterday & he's almost 3 1/2 feet, too. Big guy. The days of being able to hold him in one arm & cruise around the kitchen preparing food or meds are over & he now has to spend more time in his swing, hammock, chair, and on the floor.

Lars "celebrated" his 3 1/2 birthday by basically staying up all night. After his bath & dinner yesterday, just before bed, he threw up 3 times in a row. Absolutely everything came up & out. So back into the bath, adaptive stroller cushions & covers into the wash, etc.. Didn't know if he had a stomach bug or what, so ran his nighttime feed very slowly. He just couldn't sleep. I was way down on sleep for the week, because of my schedule & stuff I have to do right now, so the night was very crazy-making for me. I think also because he's been sleeping soooo much better than he used to, we have become accustomed to being able to sleep a good part of the night even if we're on Lars duty. Why does the occasional bad night then become even harder to manage? It's not normal any more, I guess. Which is good, until it's bad.

Wednesday I drove directly from work in Worcester to UMass Boston for my night class & the professor didn't show up. There were 10 or 15 of us there waiting. Eventually we wrote a note with our email addresses & stuck it under someone's door. The next day we get an email saying the course had been cancelled & we should be sure to check our UMB email for announcements like that. I didn't even know I had a UMB email address & in spite of 90 minutes of trying after that, I was unable to access it. But I found an equivalent course offered at Lesley on Tuesday evenings, which I can hopefully shoehorn into my schedule & use a voucher for. It could be way better.

Yesterday Joa & I decided that we should spend the afternoon swimming while Andey slept in preparation for working. I said let's wait for Lars to come back on the school bus & go to Hopkinton State Park & swim in the lake. Joa insisted we instead go to the warm pool @ Fernald. Okay, so I raced back from a meeting in Worcester, picked up Joa & Gannon, drove to Perkins & picked Lars up & all of us drove to Fernald to go swimming. Sign on the door: "pool closed sorry." Arguh. But we drove to Hopkinton State & spent the afternoon in the cool cool lake instead. Which we all agreed was way better.

school days...

Great first week @ school. Such a happy boy. Bus has been coming, but he arrived 50 minutes late Wednesday, 20 minutes late Thursday & we'll see about today. Back home is fine. Phoning the collaborative director every day & that'll continue until he's @ school on time. With only 4 hours of school I want him to have every minute & this is unacceptable. They're taking the pike instead of rt 20 like shuttlebug did, so traffic is really random instead of consistently slow & steady. I'd sure rather have him on rt. 20.

Waiting for the school bus this morning:

Check out the new lunch box:


Since Lars started on neurontin, he's only had inconsolable pain episodes like last winter's about once a month. He did have one last night. So sad. Seems okay this morning, but tired.

Med chart from last week

back in school

Well the bus didn't work out yesterday, so Andey missed an hour of morning work & brought Lars to school, I left work 5 hours early & picked him up. We were not about to let incompetence on someone else's part keep him from his first day of school.

It was fabulous, of course. He was happy & excited to be back. Tired, too. So thrilled about school he couldn't possibly nap yesterday, except 5 minutes, so he was exhausted & fell asleep early. He'll get used to this schedule again.

I attended closing circle with Lars & his buddy Eleanor, who is very happily now in his class. 100% sweet & adorable.

And the bus actually showed up this morning, albeit 20 minutes after it came last year. I'll be curious to hear whether they made it in time. Seemed like I spent basically all of yesterday on the phone in various states of irritation and irateness; as of yesterday afternoon @ 2:00 they still claimed they had no idea Lars got out @ 12:30, different from the other two kids that go from Marlborough to Perkins, who get out @ 2:30.

Will he get picked up @ 12:30 today? Stay tuned...

Wednesdays this semester I drive directly from work to my class at umass boston & won't get home 'til probably 11. Thursday morning 4:45 will come early, methinks. Kills me not to see the boys for 24 hours like that. Joa's asleep in the morning, so I won't see him from Tuesday night until Thursday afternoon :-(

school tomorrow!

Finally it's time for Lars to go back to school. He says he's been waiting for a really long time ;-)

Of course I don't know how he's getting there.

I've called this new bus company every day since I got the postcard. I did speak to a person again today & she promised again that the driver would be in touch with me by the end of the day. At 6:00 I called again to say again that no one has called me again.

I don't know what time they're coming.
I don't know if he's riding in his car seat or in his wheel chair.
If he's supposed to be riding in the wheel chair, then how does the tie down thing work, because I've never used them.
And I'm supposed to put my 3-year-old onto a bus with someone I've never met, who can't manage to return daily phone calls to her boss?
Whose boss promises repeatedly that she'll call me, but doesn't?

Andey has to work tonight, so there's a good chance she won't be here in the morning.
She's on call until 8:00 a.m.
Joa's staying overnight with Gannon because SVS doesn't start for another week.
I'm supposed to leave for work at 7:00 tomorrow.
Lars used to get on the bus @ 6:50.

Don't know if the bus is going to work, but come hell or high water I'm getting him to Perkins tomorrow.

On a better note, we had a grand time at the bed races
& then the parade with Patty, Abby, Emma, Gannon & Joa today. Sirens, bagpipes, marching bands, jazz bands, Inca Son, horses, retro bands, the spray bottle of water & lots of giggles. It was grand. And looong!

who did what?

I want to know who did what to this judge in Iowa... And I quote:

"DES MOINES (Reuters) - Gay couples lined up before dawn on Friday to apply for marriage licenses until an Iowa judge, who set off the rush to the altar by scuttling the state's law against same-sex marriage, put a halt to their bliss.

"Less than 24 hours after starting the marriage stampede, Judge Robert Hanson of the Polk County District Court issued a stay to his own ruling that had said Iowa's law restricting marriage to a man and a woman was unconstitutional.

"On Friday Hanson ordered that no more marriage licenses be issued to gay couples at the request of a county prosecutor who wanted a halt until Iowa's Supreme Court can rule on the prosecutor's appeal.

"But two Iowa State University students, Sean Fritz, 24, and Tim McQuillan, 21, beat the judge's stay and got their license, with a waiver bypassing the usual three-day waiting period.

"Then they rushed off and found a Unitarian minister to unite them in a brief ceremony in the front yard of his Des Moines home."

The rest is here.

wow

One of the best concerts I've been to in my life & certainly the most successful with both boys. Outrageously fabulous & phenomenal from start to finish, Cape Breton fiddler Natalie MacMaster is a musical virtuoso & a stunningly physically expressive human being. Joa, Lars & I LOVED every minute. While Joa wore himself out dancing through the concert & fell asleep on the way home, Lars was still dancin' & hootin' & laughin' at midnight. Soooo many thanks to Lisa & John & Griffin for taking us.

more farm time

Lars @ Davis' Farmland yesterday & today. Good use out of that season pass. Yesterday we went with Joa & Gannon & met friends there. Today Michelle brought him. Highlights from yesterday: hanging out with Sophie, Isabelle, Catherine, & their moms; pony ride & hayride; 2-day-old baby goats; petting the calf; listening to the donkey, peacock, goose, chickens, & rooster; trusty bumpy blanket & pink strap; and playing in the water, including frequently sprinkled water to cool off Mr. Lars-of-no-sweat. Not so fun: getting overheated while waiting to get in.

Lowell tonight to see Natalie MacMaster play an outdoor concert. Joa's birthday gift from Lisa & John; Lars & I lucky enough to tag along. Should be great; 7:30, so not too hot. Lars couldn't do an outdoor afternoon concert, even in this lovely weather.

Just found out the folks who were taking Lars to Perkins on the school bus have lost the contract after 5 years & someone else is supposed to be taking him, starting this Tuesday morning at 6:50. We've never met nor heard from them. Hmm. At least no tubing to chew open on the road this year. The mic-key is working great. We love it.

go Iowa

Iowa just became the second state in the U.S.A. to legalize gay marriage. Go Iowa.

well...almost

Soon after I posted yesterday Lars started to get upset. He screamed much of the rest of the afternoon & evening. Seemed to be in pain. Makes sense--they really have to yank the peg out & it had to be painful. There's a piece on the inside of the stomach keeping it from falling out usually (if you want to see what it looks like on the inside of the stomach, click here.) They literally wrap the outside tubing around their fist & pull it through. With no anesthetic. Ouch.

So anyway, we gave him some nice meds last night & lil'man is happy & pain-free this morning. Here's Larsy with his new mic-key button (that's gauze under it): The red on his skin is from the tape and duoderm we used to have to have all over his belly. This is mic-key hooked up for feeding: The old peg used to have to go straight in; this one is way flatter against his belly so he doesn't mess with it as much, so it theoretically won't get as much granulation tissue & won't be as painful. The evening's meds & tubes.