My little princess was diagnosed with I.S. back in December of 2009. Needless to say, it was the most devastating month in my life. One of the most wonderful months of the year was turned upside down and became the most frustrating.
Emily was born on June 5th 2009. She was a healthy baby born without any trauma during birth. She came into the world via C-section and was delivered at 38 weeks. My wife, Erica, has a blood clotting disorder that required her to take blood thinning shots (Arixtra) during her pregnancy. The induction was scheduled so that the Arixtra could be stopped in time to prevent severe blood loss to Erica during birth. The longer we waited the higher the risk because if Emily decided to come before planned then Erica would have been in great danger during the birth.
So Emily finally arrives safely and we become the proud parents of a 5lb, 9oz, 19in long baby girl. She was small but she was healthy and that's all that mattered. I will never forget how proud I was to walk down the hall in that hospital and show the world my little princess! I was floating on air!!
Fast forward a few months through some normal newborn activities (other than her constant fussiness, the doctors thought she had Colic) and we arrive to December. Emily started doing these things that looked like hiccups. We paid no attention to it until one day Emily was sound asleep on the couch next to Erica and woke up doing it. She was brought out of a dead sleep so my wife thought we should take Emily to the doctor to have it checked out.
Luckily for us, the doctor seen Emily while she was doing her little "hiccups". His tone changed immediately and he turned off the lights and started shining his penlight in her eyes. Our hearts dropped because he seemed so concerned and then he uttered the words we will never forget, "She's having a seizure. Call 911!" For the pediatrician to tell his nurse to call 911 was definitely cause for concern and we were still clueless. We were rushed by ambulance to the nearest Children's Hospital in Louisville, Kentucky and that began our journey.
After many consults, tests, EEG's and MRI's we finally learned that Emily had a rare and devastating seizure disorder called Infantile Spasms. It didn't register with us at first because we'd never heard of such a thing but after speaking with the neurologist and doing our own research we soon realized just what it was our little Princess was going through.
Hi, my name is Joe and I'm the father of a beautiful Princess who has Infantile Spasms. SHE has It, It does not HAVE HER!!!
The End of an Era
3 years ago