Establishing Vision Baseline

So if he wasn't teething before, he definitely is now! Can actually see the little white lines under his gum. Makes him less than thrilled most of the time. How long does this last again? 

Cyrus got his eyes checked this last week to establish a baseline. The ophthalmologist taught us a few new things. The fact that he hasn't been following or making eye contact since his huge seizure in September may not mean anything when there is a physical fine motor delay. Apparently moving the eye takes like coordination from six different muscles all moving with precision. And seeing as we KNOW he can't coordinate his muscles much it makes sense that he might not be able to move his eyes either. Eventually, when he has better head control, we should watch for him moving the entire head to look at something as moving the head is way easier than moving the eye, at least in terms of coordination.

Apparently the fact that he has been sleeping 8-9 hours in a row at night (when he's not teething!!) is a really good sign as it means light is at least getting to his mid-brain and establishing a circadian rhythm. Apparently people who are blind often only sleep three hours at a time or so (especially as babies) and then are totally awake for another three hours before wanting to go back to sleep. 

Anyway, he gave us a referral to a vision specialist who works with visually impaired children to develop things like coordination! We also get to start real physical therapy next month! So maybe he'll eventually stop wanting to arch his head back constantly! (A crucial first step to being able to sit up! But hey!! He doesn't tend to fall left or right anymore when we prop him up in the chair!)

Returning Milestones!

It's been an encouraging week! A few developmental milestones that had disappeared since the September hospitalization have made a reappearance this week. 

He's started holding onto things again, showing the step-down reflex (where he looks like he's walking or jumping when you lift him up), and a social smile!! 

His vision still seems to be in and out and he's getting this weird partial seizure that makes his face twitch (rather than his limbs), which freaks me out. But overall, the count is still low and has only needed emergency medicine once in the last two weeks!

Just an Update

Cyrus is continuing to do well in terms of seizures with about 1-2 seizures a day. There was even one day where he went completely seizure free about a week ago!

This week has been a little rough. He slept through most of his cold, but is now showing those first signs of teething. Yay? 

His other latest development has been to start occupational therapy, which is specifically to help him learn to eat! Apparently, things like eating are challenging when your limbs (and tongue!) have minds of their own. Abnormal tongue movements is actually where his choreiform movements were first identified by the neurologists back in September.