The days that changed our world

July 31, 2010 Saturday 
This is the day that Raegan had her first "episode". What the heck was that? She had just finished dinner and began shooting her arms forward and head almost hitting the tray in front of her. SILLY GIRL!!! I just thought she was playing. Told daddy about it later and we just thought no big deal and went to bed for the night.
August 1, 2010 Sunday
Our LAST Sunday morning together as a family of three! We were waking up to our LAST family breakfast as a family of three since Little Miss Carley would be making her scheduled appearance the next Friday the 6th. So here we sat the three of us in bed talking about how Raegan was going to be a BIG SISTER :) !!! All of the sudden it happened again, but this time we could see her face. Eyes jerk  back, arms jerk out. It looks like she got the startle of her life. We look at each other and say that's not right. Grab the phone, run to the car and call the dr on the way to the ER. Chest x-ray, CT scan, blood work and we are sent home everything is "clear". Everything but the "momma knot" in my stomach that tells me this is not right.
August 2, 2010 Monday
Get into the on call dr since ours is on vacation. He says it's a seizure and he would refer us out to Dr. Asaikar but that it would take days to even get a call back about the referral. Ummmmm....not to pressure anyone but I'm having a baby FRIDAY!!! I get home and call Dr. Asaikar's office myself just to "touch base". They say he is backed up because he just got back from Bombay. I explain what is going on and that I realize that they can't help me "right now" but I am scheduled to have a csection on Friday and I would like to get an idea so I can plan...she says "WELL....IF you can be here tomorrow at 1pm we will squeeze you in" I'LL TAKE IT!
August 3, 2010 Tuesday
We (Me, my big belly, Raegan, and Clara) walk into the room and exchange greetings with an older, distinguished man that has come HIGHLY recommended as he can be accredited with saving a family member. (more on that later) I show him the video of Raegan that I happened to catch the day before. He takes one look at it and says "That's an Infantile Spasm, let's pray to God I am wrong" You see time is CRUICAL when dealing with Infantile Spasms as they cause for lack of a better word Brain Damage with each "episode". Within 15minutes we are being admitted to Sutter Memorial. By 4pm that same day we are hooked up to our first EEG.
August 5, 2010
By this time we have had 72 hrs of EEG, an MRI and countless bloodwork. Our hearts sink as we are told that she indeed does have Infantile Spasms but at this time her MRI is clear. We are to begin medication ASAP by the name of Sabril. Oh but wait! It has only been approved in the US for 6 months at that point and you don't just go down to your neighboorhood pharmacy to get it, in fact our local pharmacy had to research what I was talking about...So at 11:30PM we crossed the threshold of our home, new diagnosis, in need of medication and just over 6 hours from gettting up to go the hospital to meet our newest family addition.
August 6, 2010
WELCOME CARLEY FAITH!!! We were so excited to meet our baby girl but also at the same time terrified because there were still so many questions. The biggest one being Where would we get our medicine? Well, I was in recovery after the csection and we get the call. We are now meeting a mom who is going to help us with medicine until ours comes in since we have to start this ASAP. And so the whirlwind would begin.
September 5, 2010
We find out the Sabril is not acting at 100% in controlling the seizures so back in the hospital we go. This time though it was with a 15 month old and a one month old. We looked like we were moving in! We were told that we would be beginning a series of steriod medication by the name of ACTH. The would involve shots in her thighs. We were at the hospital because you have to be monitored as you begin the shots since there is such a significant risk for high blood pressure as well as stool issues. We spent 3 days there and came home to a whole new routine. A shot in the thigh twice a day. BLAH! She only gained 4 lbs but it looked like 20 by the end of the series. Moon shaped face, HUGE pot belly. We were blessed though that we didn't have the irratibility like most people told us we would.
October 2010
We get the best news possible...ALL CLEAR!!! The shots had worked! We are told that her Infantile Spasms are gone and we will begin the weaning off process of the medication...