Three years ago today.....

Three years ago today. Mark ran into the room with Julia covered in feces, vomit, white as a ghost, eyes looking in opposite directions, body arched, looking like she had died.

I had just gotten out of the shower. I looked at her horrified, and then I went into shock mode. Mark said dial 911. I said, "can't I just take her to the doctor later on my lunch hour"??!?!?!?!(shock). Mercifully he still had his wits about him, unlike myself in that moment, and I did as he asked and called 911. They asked if she was breathing. I couldn't tell. The ambulance arrived (after much confusion about whether it would be the city or county ambulance - REALLY???). They tried rectal valium. Didn't work. They tried getting an IV. Couldn't. They tried to take her temperature figuring this was a febrile seizure - they had no themometer......They loaded her on the ambulance - i went with her, hair still wet from shower, wearing a t shirt and boxers. I called work to tell them I might be "late" that day.(?!?!?!?!?!? shock) Julia was intubated as her oxygen level had dropped extremely low and she wasn't breathing well. Thats when my senses came back and I called my mom. I went into hysterics. My baby was trying to die. I went numb. And in many respects I still am.

She was taken to the nearest hospital - Bethesda in Boynton Beach, Fl. They tried to stabilize her. They were unable to stop her seizures. She was put into a medically induced coma to stop the convulsions, but her brain was still seizing. They did a CT scan. Unremarkable results. They recommended transfer to Boca West Medical (ironically - where she was born). Mark declined this. He wanted her at the best hospital possible. So life flight was called to air transport her to Miami Children's Hospital. The helicopter would be there within the hour. Mark took Jack to Daycare - the hospital was not the place for a three and a half year old. I went home to get some clothes for the trip. I remember racing back to the hospital in the minivan - driving close to 100mph on 35 mph streets. I wanted to be with my baby. I got back. The helicopter arrived. She and I were loaded onto the helicopter - signing waivers (that she may not make it alive to Miami and that we would not hold the helicoptor company responsible, etc...) I signed whatever they put in front of me and off we went. We arrived on Friday afternoon - Friday afternoons are not the best time to arrive in PICU - everyone wants to go home. A neurologist was called in eventually. And then the circus began. "She will be fine in a few days"...."she might not make it"....."we don't know exactly what is wrong"....."were there any toxins"....."it would be VERY unlikely for it to be the vaccine" (and my search began)......"did she have a fever"....."did she fall or suffer a blow to the head"....."its likely a virus" (we now know which virus - MEASLES FROM HER VACCINE).......we will do an MRI "later" when we can"........."go get some rest" (RIGHT).........."the MRI IS NORMAL (said by the nurse)........"we need to talk privately about the MRI (said by the dr) "the results are not good".........the rest is history.

Three years....as I tossed and turned last night I couldn't believe it has only been three years. It feels like 30, or 300. I am serious. Last night I truly couldn't believe how long a time period it seems since all this happened, but three years is just a blink of an eye. This is GREAT because it HAS only been 3 years. Though I feel like we have done soooo much in this three years - we have LOTS of time to do MORE and she has LOTS of time to get better. This morning I was depressed at speech therapy because its been three years of speech therapy and she still has no words...but its ONLY been THREE years! So much time for improvement. SO many different things to try assuming we can find the funding to do so. So, it is a sad day, but hey, its only been three years.

So, enough rambling about it. She is who she is, and I love her. I cannot get back the girl she once was - all I can do is keep trying to make her the best she can be (which, if this is it - so be it - but I don't think so). She has a lot of potential. She is a fighter. She is smart and someday will be able to show all of us everything she knows. AND, someday she will talk our ear off and we will ask....gosh - remember when she COULDN'T TALK!!! I sure hope so!

Lets keep going, Julia...today is just another day - right! And the beginning of a year that has a lot of promise for you!

Susan