Wednesday, January 13, 2010

D-day!

The day Emily was diagnosed with infantile spasms was the hardest day by far. Let me back up a little...
For several weeks we noticed Emily doing what we called her baby crunches. It mostly happened after a major meltdown. She hated the car, she would cry the entire time we had to go somewhere so when we would finally get her calmed down she would kinda jerk her arms and legs. We thought she was just really worked up and after a few minutes she would stop. I called the phone nurses at my pediatricians office and told them exactly what she was doing and they agreed that it was most likely her immature nervous system and not to worry. So we waited a few more weeks and even went on vacation to Joe's dads house 4 hours away. Her "baby crunches" continued so when we returned from vacation I called and made an appointment.

Dec 3rd was her appt and she of course screamed the whole way to the doctor. Normally we wait forever in the waiting room so by the time we see the doctor she quits do "crunches" but this day we walked in and I finally got her calmed down and then the "crunches" began and they called our name. That was a first, to be called back so quickly. The doctor walked in the room and we explained what had been going on and then she did it right in front of him. Immediately he turned off the lights and used a light to check her pupils and she didn't even flinch. My heart sank. I knew something was wrong. Then he calmly turned to us and said she is having a seizure. The room starting spinning. A million questions came to my mind but I just stood there. Nothing would come out. He then opened the door and told the nurse to call 911 for an ambulance. The ambulance was there within minutes. They strapped me to the stretcher and I got to hold her. Joe followed in the van behind us. It was all such a blur. The next thing I knew we were in the hospital with doctors and very young students aspiring to be doctors asking us the very same questions, over and over again. She had several seizures while we were there so most of the doctors and wanna-be doctors got to see them in person. No one was saying a thing. They put her on monitors and sat in a 4x4 room (literally it was sooo tiny). She had some labs drawn and a ct done and they admitted us to the neuro floor. It was so late by this point but I already knew that no sleep would be had for either of us. We still didn't have any answers and we wouldn't until after more testing the next day.


Dec. 4th, we saw several more doctors including the neurologist. They asked alot more questions but still no answers. She had an eeg done and of course the tech couldn't tell us anything. She was still so out it from all the ativan she had been given from the long night seizures that she didn't have one seizure, so we thought, during the whole eeg. Not too long after the eeg we saw the neurologist again. He was very serious and said that he had reviewed Emily's eeg and it was in fact seizures and that she even had a seizure the entire time she had the eeg. Then he said those two horrible words infantile spasms. In my head I thought well that doesn't sound horrible, heck I have had spasms in my muscles before. I guess it showed on my face because he said this is not good, this is the worst kind of seizures. I felt my heart stop, I couldn't breath, all i could do was look at my beautiful baby laying in the huge bed sound asleep. I just thought stupid doctor look at her! she is perfect! I tried to hold it together so I could retain what he was saying. Luckily my best friend Angie was there to hear what he said too. He went on to say that the prognosis for babies with IS is very poor, I heard retardation, slow, long term problems,.... He said we are gonna start her on ACTH inj today and went over the multitude of side effects, the room was spinning again. I had to hurt my baby to try and make her better. He shook our hands and said he would see us in the morning. I sat down on a chair and Joe began pasing the room. I couldn't talk, think, and I was doing good to breath. Angie hugged me and I think that is what bought me back to reality.

Self pity didn't last long. I think fight or flight mode kicked in and Joe and I were gonna fight for our baby. Don't get me wrong, I questioned a lot of things. I was mad at God! Why did He do this? Why my baby? Why us? Why give us this baby and then make her sick? How were we gonna do this? It was then I looked over at Emily and didn't see her as sick I saw MY BABY. I didn't see her as a burden I saw her as a blessing. I quit asking why us God and realized it was why not us. Why not choose Joe and I to love and raise this amazingly beautiful angel.

The reality of it all is Emily has a long road ahead of her. Her disabilities or abilities are still unknown. Joe and I will always love her no matter what does or does not happen. We will rejoice the little things that happen and be prepared for the bumps too. We have an amazing support system in family and our church family. We CAN and WILL do this!

3 comments:

  1. That attitude right there is exactly why God entrusted this little precious girl with you! :)

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  2. Came over from Rebecca's blog. I had never even heard of this condition. Will keep your daughter (who, I might add, is GORGEOUS)in my prayers.

    Hallie

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