Community Discussion Forum Parent support PKU – numbers and such and lots and lots of questions Reply To: PKU – numbers and such and lots and lots of questions

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Congratulations on your baby!  Know this — the first few months are the hardest.  You are trying to get over the shock and figure out how to manage the diet, all while overwhelmed and exhausted.  I pumped for Molly when she was a baby, so that I knew exactly how much phe she was getting.  We added it to her formula so that she was getting the same drink each time and would not show a preference, and it also distributed her phe evenly throughout the day.  Levels still went up and down as the doctor and nutritionist tried to figure out what her individual phe tolerance was.  Once that was figured out, things went easier until we hit growth spurts and needed to adjust her phe intake.  I pumped for a year for Molly.  There was good and bad with that.  On a plus, we knew exactly how much she was getting and could adjust her phe easily by adding more/less to her drink, she did not have a preference of formula over breast milk since we mixed it together.  The negative was the emotional toll it took on me.  To find the time to pump and feed and to try to maintain milk supply was very difficult when I was bawling every time I turned on the machine, exhausted and not taking care of myself.  When I was pregnant with my son, I decided if he had PKU I would breast feed him because pumping soley was too hard for me.  It is a personal decision that you need to work your way through.  All I wanted was to know that Molly was gong to be ok.  I wanted to fast forward to her being 5, see that she was fine, rewind and enjoy her instead of worrying so much.  Molly is more than ok, she is wonderful.  PKU never gets easy, but it does get a lot easier.  Attached is a link to a video to Molly (now 9) – while I know it is not the same as seeing your daughter, perhaps it will ease your mind a little.
When you are ready for foods, check out my non-for-profit Cook for Love.  It is a culinary website devoted to low protein cooking .
Good Luck,

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