The whole family is sick this week…it’s Kaleb’s very first illness. We used to say he’s never been sick except IS but not anymore. Also means that he wasn’t able to go to any therapy or early start this week unfortunately (they have strict sick policies and we wouldn’t want to get his therapists sick either). Things have also been stalling because he’s miserable and just wants to sleep but the only good thing if that it’s just a bad cold and he has no fever. Hopefully he’ll get better soon and we’ll catch up next week.
For some time we’ve been very concerned because Kaleb was not actually looking at the puffs on his tray as he grabbed ate them.
In fact, he wouldn’t look at them at all, and instead just fished around like he was virtually blind.
He’s definitely not blind, and appears not to have a Cortical Visual Impairment-type problem because he keeps very good eye contact and tracks objects with his eyes pretty well. He pays avid attention to the little remote controlled helicopter I fly around the room from time to time.
But lately we’ve caught him examining his tray and looking for (and at) his puffs!
It’s possible that he just wasn’t comfortable looking down, considering the low muscle tone/control that he’s had in his neck. It’s also possible that coaxing him to use his left arm to eat puffs is what made the difference. However it happened, we’re pleased that he’s starting to look at his food.
He will wean from his medication in a few months. We’re hoping and praying that the hypsarrythmia stays away!
From Kaleb, while playing with mommy’s iPad, sent to daddy via instant message:
” M rm m M 8′
We’ve officially started all three new therapies now: physical therapy (PT) with CCS (and discontinuing private PT as a result because it would otherwise disqualify us for CCS) and occupational therapy (OT) and speech therapy (ST) privately until we get in through the wait list for CCS OT and with the speech teacher at Early Start (the state’s early intervention program).
In the past week, Kaleb also got his very first braces to assist with his sitting in a chair and his standing. These $150 orthopedic devices are borrowed and passed on from kid to kid as they grow out of it, compliments of Early Start. Here’s Kaleb showing them off! Because he’s still very unstable on his feet, I’ve also set up a pile of comforters to cushion his fall (which he put into very good use as well). We’re hoping these braces can slowly help his feet align in a more appropriate position, and to hopefully help him walk one day.
Kaleb loved the swing at the park today and was able to hold on by himself with both hands! We’re so proud of him! B was more interested in playing on the train and truck structures with the other kids instead of staying put for a picture =)
Kaleb has also finally gotten into the state’s CCS physical therapy program this week, after being on the waiting list since November. We’re also starting our first occupational therapy session this week as well, and he will be starting speech therapy next week! Very busy and exciting times!
Kaleb can put a puff to his mouth when I place it in his left hand! This is a huge step for his affected side! Yay!