Friday, October 8, 2010

Annual PKU Meeting

     I made it through the first month of Lily's life and somehow was able to keep her phe levels in the "norm!"  I know!  I was pretty impressed myself, but to be honest, it was pretty easy when all I have to do is properly mix her formula and nurse her every other feeding.  Yes, I am now able to breast feed Lily again.  Trust me, my breasts really appreciated it... No more pumping in the middle of the night :)
     Every November, the Illinois PKU Organization hosts an annual meeting.  We decided to attend and were fortunate to have my parents, in laws, and sister-in-law with us.  I wasn't sure what to expect.  When we walked in, I was blown away.  There were so many families and they all immediately navigated to us.  It was almost like there was a blinking sign with an arrow pointing at us stating "NEW MEMBER!"  At first I was a little overwhelmed but was relieved when everyone was so friendly. 
     Diane, our dietitian, brought a young family to us and made the introductions.  This family had just gone through the same thing a year ago.  And to my astonishment, they made it through and they didn't look all frazzled.  This was definitely a silver lining in my dark cloud.  We exchanged numbers and vowed to keep in touch.
     A twenty-something girl introduced herself to us and we had a wonderful conversation.  She was currently in college and had PKU.  I asked her how was it away from home with all of the temptations to cheat on her PKU diet.  She was honest and said that she had cheated but know how important it was to stay on diet.  Fortunately, she had a strong support system of family and friends who looked out for her, yet allowed her to make her choices and deal with the consequences...just like life!
     One of the speakers was a genetics doctor from New York.  She spoke of all of the problems that are contributed with PKU.  She was not the best speaker to listen to...too brutally honest.  I looked at my family and their eyes were bugging out of their head and my mom had tears in her eyes.  I was suddenly terrified.  As soon as there was a break in the conference, three different families came over to us and told to completely ignore the professional!  She may have scientific data, but they had experiences.
     I left the conference with a new mindset.  I now knew all the facts and had faces to go with PKU patients.  I met children, high school students, and college graduates.  All of whom had PKU.  PKU is a genetic disorder but not a jail sentence.  Individuals with PKU can have a wonderful life if they learn early how important their diet is.  As a parent, I set the foundation for Lily's prognosis.  With careful planning and honesty, I can prepare Lily to advocate for herself when I'm not there.  The parents taught me that it all comes with time.  I can't expect myself to be able to accept everything immediately, that there will be setbacks.  I learned that I need to be honest with Lily, my family, and most importantly with myself.  Yea, I heard some scary stories, but that didn't have to be us. 
     The bright side to PKU is that the ending is not yet written.  There are new foods and medicines being created all the time.  There is a lot of money being invested in a potential cure for PKU.  With my dedication, Lily's future will be bright!

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