eating. i mean REALLY EATING

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

Happy Birthday, Lars!

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...

sprained ankle

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

mesmerized

by new silicon bumpy

IEP

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

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

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

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.