baby mummy.

we had a test! 

about a day or two after our appt with neuro, we got a call to set up the ambulatory eeg, which is not a fun thing to go through...  especially with a 1 year old, and probably the worst tech to ever work with children ever...  ever.  tomorrow will be one week since we went and he still has adhesive that is just refusing to come off and weird bruises were the tech drew on his head with what looked like an overhead projector pencil...  dont act like you dont remember those...

anyway, she attached something like 25 wires to his head, these were connected to a little box and then she plopped that box on the top of his head and gauzed him up like a baby mummy.  then there was a thick cord that came from that box to a bigger box that he had to wear in a backpack.  and once we got home, we had an even bigger box, like a shoe box for boots but with like ten pair of boots somehow squeezed inside.  the big box had to be plugged into the wall and connected to the medium sized backpack box, it also had a camera on top of it that i had to try to keep on the baby...  super easy.  blah.  it was terrible, he kept pulling at his head, pulling at the cords, he hardly slept, and everything on the top of his head was on the side of his head when he got up the next morning.

heres a pic of my baby man with his gear on, and i even caught his little 'episode'

 

BUT.  we got the results and its not seizures!  yay!  but that just means its some sort of other behavioral tic that needs to be addressed, im really hoping its just some weird thing that hes decided to do for no apparent reason and nothing neurological related to his microcephaly. we have an appt in march with a pediatric developmentalist so i guess we will see then.  we're still waiting on the results from the bloodwork ordered by the geneticist...  theres a lot of waiting.

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. 

bloody tests!

im the worst blogger in the history of blogdom.

here i start a blog for all those moms and dads whose children have been diagnosed with similar things to mine so that maybe one of them can come across it and actually see good news.  ive found that most blogs started due to a childs health issue seem to just fade off once the child has gotten better, been given a good diagnosis, or any other multitude of reasons.

so much has happened since i last wrote.

we went on an awesome vacation!  two weeks in florida before the dreaded MRI for the baby.  honestly, i wasnt even worried about the MRI itself, i was more concerned with the whole anesthesia thing...  but all went well.  he cried a bit when they put the face mask on him, but out he went, and he was awake before they even got him into the recovery room.  and by that afternoon, he was walking around and playing like nothing out of the norm had even happened. 

next we went back to the neurologist to go over everything, fantastic results!  his brain looks totally normal, so my happy happy baby is one of the few with microcephaly that has no brain damage.  woohoo!  but his head is still small so the doc wants to continue monitoring him, and wanted us to go ahead and keep the appt we made with the pediatric geneticists. 

finally the day comes for appt with genetics!  i truly had no idea what to expect, but  i think it went really well.  apparently we saw the expert dr in NF-1, Dr. Rosenbaum at Children's, which was awesome because just from a physical examination he ruled it out completely.  the babys giant birthmark is just a giant birthmark.  so much good news!  we were given an order to get some more blood work done, more specifically an array which i guess is an easier and cheaper way to see if there are any genetic abnormalities.  and also a test to see how his muscles are performing.  im assuming that goes along with his hypotonia issue.  hopefully well be finding out the results from the bloodwork any day now... 

so currently its just a waiting game.  i promise to update as soon as anything new comes up!