Wednesday, October 6, 2010

Team PKU

     A few days after Lily's diagnosis, we met her PKU team.  Dr. George Hoganson became Lily's genetics doctor.  He is based out of UIC, but once a week he comes to Rockford Memorial Hospital.  Ryan couldn't attend this first appointment, so my mother-in-law offered to come with me.  Fortunately I have a wonderful relationship with my in laws.  I am blessed in this area!
     It was nice having Marci (mother-in-law) with me because her daughter, Erin, has hyperphenylalaninemia (a milder version of PKU).  So Marci has already gone through a similar experience and I was hoping that it would make my experience a little easier. 
    When we got to the appointment, we met Val (secretary for Dr. Hoganson) and she immediately put my nerves at ease.  Val was so friendly and instantly calmed me with her pleasant chit chat and smile.  Shortly afterwards, we were introduced to Diane Simon (dietitian).  Diane reviewed the information that I had heard in Chicago and got right to Lily.  She talked about Lily's future and about how she would always be there for us.  She talked about other families who have gone through this before us and that many more would go through this after us.  This reminded me that I now had an even larger family.  A PKU family.
     Dr. Hoganson came in and was all business.  He told it like it was and never sugar coated anything.  I suppose that I could have gotten emotional again, but I did need the facts.  I needed to be guided and told exactly what I should and shouldn't do.  I needed to know what the outcome would be if I didn't follow his instructions.  I needed someone to hold my hand and help me start my journey.  This is exactly what Val, Diane and Dr. Hoganson did.
     This office would become my home away from home.  I would have monthly visits with Lily's PKU team and would talk to Diane on an almost weekly basis.  Diane would become more than just a dietitian to me.  Diane would become a trusted friend and confidant.  Dr. Hoganson would become the strength that I needed.  Val would become the friendly voice on the phone that would reassure me.
     This is Team PKU and I couldn't have asked for anyone better.  This team was just the start of Lily's journey and what a start it was.

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