Finally an answer

Sunday, July 6, 2014

We have been on pins and needles around here waiting for the phone call.  The one that would tell us whether or not Paloma did in fact have Dravet Syndrome as I had suspected since she first started having seizures.  Her neurologist assured me that she did not have it and that she was developing normally which was a a good sign.  I held on to the hope that perhaps it was something she would outgrow with time.  I knew in my heart though it was Dravet.  So when the phone rang Tuesday afternoon and my doctor said unfortunately she was positive I didn't cry right away, I calmly said I know and then called my mom and David to break the news.  It's been a somber week around here.  One glimmer of hope that I have clung to this week is that from here on out I need to trust my instinct when it comes to Paloma's care.  My instinct told me a long time ago that Dravet was what we were dealing with and it also told me to go against putting her on phenobarbital.  However, I did not listen and thought the doctor knew best.  I am not anti doctor but I am also not going to agree with my doctors decisions without careful research, prayer and talking with fellow Dravet parents. 

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