We are approaching five months now that Rhythm has been seizure free. We have grown comfortable, free from the daily nerves and trepidation of seeing those damn things. Even the mild ones or myoclonic ones were heartbreaking. But it's been a long time since we've seen even those.
The ravaging effects of Infantile Spasms are still present with Rhythm. She is not crawling or sitting up yet. Walking is still far off in the distance of a developmental milestone. She has made some progress with her vocalizations, but her communication skill set consists mainly of sound effects with her mouth and tongue. Strangely, she has already learned how to whistle. But she can't say mommy or daddy yet. She can not maintain eye contact, so we are unsure if she is really seeing or reacting to us.
Despite all of that, positive signs are there. She is crying less and laughing more. She is noticing parts of her own body. Her finger has discovered her nose, mouth and ears. She can clap. She reacts to music in a noticeable way, and in a happy way. She can let us know when she doesn't like something. It's obvious when she is hungry or thirsty. And she now loves her bath!
She has four therapy session types ongoing currently - Physical, Occupational, Speech and Vision. She has a Stander now that will help her learn to be upright. But soon, Rhythm will turn 3 years old, and we need to segue from Early Intervention to preschool. The thought of Rhythm going to preschool is both exciting and terrifying. Part of me thinks she will advance even more, but the other part of me thinks she will cry all day and be scared.
Rhythm has a big test coming up soon. One that will either confirm that the hyppsarhythmia in her brain is gone, and so is the Infantile Spasms. Or one that will still come back as abnormal still and shatter our comfort. We have a 2 day at home EEG for her scheduled that will show her brain waves for the first time since her seizures stopped. I don't know what to expect, and I'm nervous. We often wonder what's going on in that little head of hers. We will soon find out.