Current Events

Joa is 41 pounds & about 3 1/2 feet tall.

Lars was 22 pounds, 3 ounces on 5/15.

Joa is doing great. He's VERY excited about school (Sudbury Valley School), and dance class, both of which began this fall.

Lars' medical update: Lars is still having a kind of seizures called Infantile Spasms, although they're getting fewer and farther between and he no longer has the damaging EEG pattern that goes with them, hypsarrhythmia. Just the last week we've been wondering if he has started having absence seizures. We have an EEG and epileptology appointment scheduled 6/20, and neurology on 6/1. Lars takes Vigabatrin and B6 for seizures. His vision is complicated. We think he Cerebral Visual Impairment (also known as Cortical Visual Impairment or CVI), but he also has some optic nerve hypoplasia, and something that looks a little like ocular albinism, but isn't necessarily. He has nystagmus and both esotropia and exotropia at different times. We really don't know what he sees, and it seems to change from day to day. Certainly vision is not the primary way he takes in information about his world; that would be first auditory and second tactile. Lars' static conditions are microcephaly and periventricular calcifications. He has 16 teeth. He's a delightful soul and we love being with him. He's learning to sit alone, and working on rolling over. He has good head control, and can manipulate toys with his hands pretty well. Most days we get smiles and can coax some laughter out of him. No, he still doesn't sleep through the night. Some nights he's only up an hour or two, other nights are much worse.

He's part of the fantastic Perkins School for the Blind Infant/Toddler program, and receives Early Intervention services from Thom Marlborough Area Early Intervention (occupational therapy and physical therapy). He has cranial-sacral therapy and music therapy every week. We also have lots of doctors' and specialists' appointments and attend Music Together classes.

Joa's favorite foods (his list as of December 10, 2004): æbleskiver, pancakes, pasta, meat (specifically turkey is the current favorite), tomatoes, cupcakes.

Lars has his first 16 teeth, but really doesn't like to eat any solids right now.

Joa is
6 3/4

Lars is
14 1/2 months

Joa is currently interested in Tom & Jerry videos, dance, colonial times and the American Revolutionary war, inventions, space, newspapers, constructing things, Legos, volcanoes, playing with his dog Abby, trains, books, music (Tom Paxton and Tom Chapin are still favorites), being with other kids, computers, play places, and planning the many things he wants to do when he grows up. On April 24th 2004 he announced that his two favorite things in the world are volcanoes and fossils.

Lars is interested in his Little Room and his Perkins Panda, playing with LOTS of different stuff (definitely not just "traditional" baby toys), sucking on fingers, biting anything he can, swinging, standing up and bouncing, snuggling, listening to music, being sung to, and singing.

Currently: