Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

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Congratulations on your son!  The diagnosis of PKU is such a shock because your baby seems so perfect.  When Molly was first diagnosed, we were so overwhelmed with grief and worry that sometimes it was hard to sit back and just enjoy the gift of a new baby.  We initially wondered what we could have done to deserve this.  As Molly started to grow and her personality started to emerge that shifted to wondering what we could have done to deserve her.  Molly is now nine.  She is an extremely bright, funny and compassionate child.  She is also a stubborn pain in my butt who loves to torture me — just like any other nine year old girl.  All I wanted that first year was a fast forward – to look and see that Molly was ok — and then rewind and enjoy her.  I am going to give you a fast forward.  Here is a video of Molly

If you want to know what your child will eat, go to Cook for Love.  It is a culinary website I created that is devoted to low protein cooking.

Know that the first year is the most difficult.  I will not lie and tell you things get easy in time, but I will promise that it gets easier.  Good luck and hug that baby!

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