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.

after the bone scan

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

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

help me out here

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