This is the story of Ariel Anna .  Ariel was born on October 23, 2002 by a planned C Section due to a previous unrelated complication.

When Ariel was born, we thought everything was fine.  However, shortly after birth something was terribly wrong. Ariel was transfered to the NICU where it was discovered that Ariel was born without a gag or swallow reflex, and  didn't move much, except for tremors in her arm, leg, and lower lip.  At first I didn't think much of Ariel's lack of gag reflex since her older brother, Julian did not have a gag reflex after birth as well.  His resumed when Julian was 3 days old.  I thought this would be the case with Ariel. It wasn't.

It was learned while in the NICU that Ariel had HYPOTONIA, or low muscle tone.  Ariel had no "bulk" to her. Her head lagged terribly. Holding her was as if she would slip through your arms. 

Ariel was also put on Phenobarbitul due to her tremors. The first 3 EEG's in the NICU showed suizure activity.  If that wasn't bad enough, Ariel's eyes also rolled back. It was as if she had "doll eyes".  What was going on with our beautiful daughter?

The hospital started to run some tests to find the cause of the Hypotonia. A MRI was normal, but three EEG's were abnormal. Blood testing was also done. We were eager to find the cause of the hypotonia.

After 2 weeks in the NICU at our local hospital in Staten Island, NY we decided to transfer Ariel to Cornell Medical Center for further testing.  We were counting on Cornell to give us a diagnosis with Ariel.

On November 13, 2002 Ariel was transported via ambulance to Cornell Medical Center.  Cornell made St. Vincents Hospital in Staten Island look primitive.  The NICU had their own seperate wing, and parents were incouraged to decorate the cribs, and bring clothing for their children while in the NICU.  Everything was computerized and doctors and nurses wrote up their notes right there on the computer after seeing their patient.

 At Cornell, the Doctor's did additional testing.  More blood work drawn, and a muscle biopsy was taken. Another MRI was taken which  came back normal, and another EEG was taken, which came back normal! Ariel was then weened off the Phenobarbitul! Ariel no longer had tremors, and her eyes were focusing,  Ariel also started to move around a lot more.  She kicked her legs, and moved her arms. The staff was pretty impressed with her! 

Ariel still did not have her gag or swallow reflex and talk of a permanent feeding tube was discussed.  On November 21 Ariel was taken to the O R for a feeding tube.  This was the hardest day of my life.  I had hoped right until she was wheeled into the O R that Ariel would start to swallow.  A feeding tube placed through her stomach was so permanent to me.  It was as if this was the final step, Ariel will never be fed orally at all.   I now feel differently about this.  After many months, I have come to accept this fact and still hope one day Ariel will be able to fed orally. 

We still haven't been able to find the reason for the Hypotonia, and Ariel does require a feeding tube and a little suctioning here and there for pooling of her secretions, but Ariel was able to come home on December 15, 2002.  Just in time for Christamas.  After being in the NICU for nearly 2 months, Ariel was finally home!

OCTOBER 2004

After 2 years, we finally learned that Ariel has CP. Her neuro was able to pinpoint that her CP is a result of PVL, which is trauma to the brain in utero. I suspect this happened from a car accident I was in while 6 months pregnant, although there is no way to tell.

The guessing is over!!