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.

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