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...

Well as most know we have been trying more and more of Luke's low-protein foods, I had blogged about him trying some of his little pasta circles  here . Well they have gone over really well, as has the low protein version of rice! Luke really enjoys it if I mix the rice with coconut yogurt (plain) and a bit of cinnamon, almost like a little guys rice pudding!  We tried the Eggz next and it was a bit more of an adventure then the pasta! Eggz powder comes in a bag and has simple instructions - add "non-dairy creamer" and let sit, then cook one side and flip. So easy.... yeah not so much. Okay the first one was a flop. I thought it would be more like normal eggs and be soft enough for him to nibble on, instead it was much to firm on the outside and not what I would consider safe for a little. So I decided to scramble them up like normal eggs, which of course they didn't do the way I am used to but this time I had softer pieces for him to try a...

Lucas having some applesauce with my cousin Amanda in BC   One of my worries when we thought about solids was that the "easy" feeding methods would not be something we would be able to use, things like food pouches and self feeding foods like rusks and puffs. Well that proved an unfounded fear as pouches that are only one type of fruit or a mix of low-protein veggies and fruit are ones I can pretty easily estimate the amount of phe. The puffs and rice rusks are low in protein, especially considering how little they weigh, which is wonderful because they make great distractions when trying to cook a hungry little guy some food. Back Left to Right : Bread mix for a bread machine, case of phenyl-free formula, Mushroom Burger Mix Front Left to Right: Amino-acid supplements, Lo-Pro Anellini, Lo-pro Rice So now that Lucas is ready to start having "more solid" type foods I ordered up what I consider the next step in his diet. One of the things I wanted t...