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PKU Mom

Things I have learned as a PKU Mom 
(and as a Mom in gereral)
  • Never let your supply of formula run out (dry or the stuff you have pre-made) order and make LOTS!
  • Lancets (the things we use to do the heel poke) are expensive but it's worth it to have the right one!
  • Do not cheap out on a shaker bottle for making formula, it will leak or explode and that is so not okay
  • Plan ahead as much as possible - it makes life easier
  • But plan for things to change
  • People are amazing at offering love and support, ask for help when you need it but make sure to pay it back when you can
  • There are people you can talk to somewhere in the world going though almost the exact same thing you are, sometimes it is nice to talk to someone who knows exactly what you are dealing with
  • Don't hide or feel embarrassed about having to ask for different food choices but also try not to let it take over your enjoyment of what is offered
  • It hurts some days to think this is a life long condition, let yourself cry and then pull up your socks 
Luke's lancets and sharps disposal container

We receive some of Luke's food frozen
and it is VERY important to be home to
receive it and put it away asap.

Prep Prep Prep and PREP


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