Monday, January 10, 2011

Big Mistake

     I have probably just made the biggest mistake of my life....and it regards Lily's PKU!  Over the past 2 months, I have been giving Lily yogurt.  I looked in our Phe book and it lists low fat yogurt as having 30 phe per tablespoon/ 15g.  Somehow I completely read it wrong and thougth that it said 1 tablespoon=15 phe.  So I have been giving Lily a lot of yogurt because she loves it and 2 tablespoons is a reasonable amount to mix with her rice cereal. 
     It wasn't until a week ago that we discovered my mistake.  I say we, because Ryan was finally writing in Lily's food journal and didn't know the amount of phe for yogurt, so he looked it up in the book.  It was to his horror that he wrote down 30phe and looked up a few lines on the journal and noticed that I had 15phe written down.  We were so worried and I instantly started beating myself up.  Here I am thinking that I've finally gotten things under control.  We have been blessed with the fact that Lily takes her formula with no problem and all of her blood tests have been between the ideal 2-4 range of phe levels.  I was thinking that this wasn't as difficult as many people had told me.  Just when I started to get a little overconfident, Ryan discovered my mistake.
     I cried so hard and instantly started to worry that I was sabotaging my daughter's brain development.  As her mother, it is my job to protect her and ensure that she stays on diet.  How could I have become so incompetent and overconfident?  As we looked over Lily's food diet, we realized there were days when her phe levels were anywhere between 30-100 phe higher than her allotted 125phe.  Over time this could definitely impact Lily's brain development.  I felt like the biggest failure to my daughter. 
     Ryan and I went back through Lily's medical binder and compared her blood test results with her diets.  Even on the days when Lily's phe was really high, her blood test results were still in the ideal 2-4 range.  A sigh of relief could have been heard a mile away!  Yes I made a mistake, but fortunately Lily was able to handle the higher amount of phe.
     After a few days on the correct phe diet, we took a new blood sample.  I haven't heard back with the results, but I am imagining that it will be low.  I'm hoping that the next few results will be low and Lily's phe will once again be increased.  This is just a reminder that I can't point fingers at other people's mistakes and accidents.  I need to be held accountable for my mistake and slow down when I am balancing Lily's diet.  This is one mistake that I have learned from!

**Lily's latest blood test was 1.3.  Even with us me messing up her diet, she still had low phe!**


  1. I'm happy for you that she seemed to handle it okay. We've all done this before! We had a miscommunication in our house once and what my husband told me was free in phe was actually quite high! I was so stressed about it and worried. Things turned out okay though. We learn through these experiences. She will be okay! :) Hope you get awesome blood levels this time!

  2. I saw your blog listed on another friends page, my 15 month old son also has PKU. It is great to be able to read about experiences of others. I have also made similar mistakes with my son's's the only way we can learn. Sounds like you are a great mom and she is going to be fine :)


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