Saturday, September 22, 2007

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.

Friday, September 21, 2007

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.

Thursday, September 20, 2007

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.

Monday, September 17, 2007

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.

Wednesday, September 12, 2007

Shana Tovah

Monday, September 10, 2007

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.

Saturday, September 08, 2007

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.

Friday, September 07, 2007

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.

Thursday, September 06, 2007