my sweet baby boy was diagnosed with microcephaly, hypotonia, and now duchenne muscular dystrophy. after searching for some support, i realized there werent many happy stories out there, so here i am to tell you the story of my happy happy baby.

Wednesday, February 6, 2013

silly baby?

alright so we have a new symptom...

last week my little one started doing a silly little thing.  he learned to roll his eyes.  well, thats what i thought at first anyway. 

we were just playing and being silly and my little bug rolled his eyes at me, almost as if to say 'oh mooom...'  then the longer i thought about it, i wondered if one year olds understand rolling their eyes in a sarcastic or silly way.  i had no idea.  but then it kept happening over and over again, even when he was playing all by himself and had no idea i was even watching him.  he would just pause and slightly tilt his head and roll his eyes up and to the direction that he was tilted.  after 4-5 seconds, he would go right back to playing, or walking, or eating... 

a few days after it started, he had about 20+ episodes in one day.

so i happen to be writing his genetics dr about something else and decided to just mention it and see if it was something i should be concerned with or if maybe im just being super observant to anything that could be neurological.  he calls my house at 8:45 from his home.  apparently it is something i should be concerned about.  he tells me to call his pediatrician and neurologist first thing the next morning and that if i dont get any response to call him back and he will light a fire to get things rolling, which didnt need to happen because the neuro said he wanted to see us in the next couple days. 

the day after i made all the calls, my sweet baby continued with his eye rolling, but took it a step further when he rolled his eyes all the way back in his head, i could only see the whites, while his eyelids fluttered rapidly.  this happened about 5-6 times right in a row, and thankfully hasnt happened again since.  it was not something id like to see again anytime soon.

so yesterday we got in to see the neurologist and were basically just told that we have to do more tests, which isnt a big surprise.  once everything gets approved by insurance, my little man will go in for an extended eeg.  we dont have to stay in the hospital, but im wondering how well this is going to go... he doesnt even like to wear hats.  but i guess its the only way to determine if these episodes are mini seizures, or if they are more like a tic... 

ugh.  more tests.  more waiting. 

No comments:

Post a Comment