Parenting PKU

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

Good news today is that Lucas got to go up a bit in his phe tolerance, he is now at 600 - 610mg phe per day. Woohoo a nice early birthday present for Lucas. Well by request here is a list of foods people have been curious about the phe content! One egg (boiled) = 715mg phe Mars Bar (full size) = approx 140mg phe Grilled Cheese Sandwich = approx 610mg phe (if made with a kraft cheese slice) Budweiser Beer = 72mg phe Spaghetti (noodles only) 1 cup cooked = approx 440mg phe Ritz Crackers (1 cracker) = 10mg phe Celery with cheddar cheese = 8mg phe for celery & 1375mg phe in 100gr of cheese Tim Hortons Muffins = 275 - 330mg phe  Lucas eats 150mg of phe at each of his 3 meals and then about 75 mg of phe per snack.  So as you can see there is a reason why dairy, meat, and gluten are no go areas for Lucas on a regular basis! If you have any questions or want to know a different food let me know!!!