September is newborn screening awareness month!

PKU Proud

As many of you may know, September is Newborn Screening awareness month!


Many people do know what newborn screening is or what it does until there child is diagnosed with something.  Many people just know it as the heal poke test.  it is my goal for September to educate as many friends and followers as I can in what it is, what it does, and why it is important. It saddens me to hear how many parents wish they could denies newborn screening to save their baby from the “pain” or “torture” or just from being “poked and prodded” so much after birth. specially if the birth is traumatic.  As a nurse and a women with PKU I feel that education is so important and should be apart of birthing and pregnancy education. I wish all nurses, doulas and mid wife’s would include it in the education and support…

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I lost track – somehow…

Good Morning everyone…

I’m sad to say that I somehow lost track of PKU diet – again. I’m very frustrated… but full of good intentions. There will be  a change of job by the beginning of October, so I want to start off by tomorrow again, to be in best shape for the new start.

I want to start the traditional way. Writing down and weighting every little bit I’m going to eat. I hope I can make it. I have like 1.000.000 tries behind me. It’s not, that I don’t know what I am doing this for or why. BUT I FIND IT SO HARD AT THE MOMENT. Have you been there? I’ve started the past week twice (!!!) and lost track somewhere during the day because either a colleague brought some cake (never underestimate the power of – bad- thoughts during work ;o) or in the evening when I was to lazy to cook…

Yesterday we went to a wedding (by the way, it was a wonderful day – just want my wedding to be like this…), and our friends did a great effort with organising special food. I had a salad with mushrooms for starter, a pumpkin soup, then I got a rice risotto with mushrooms and a sorbet as dessert. Wow. It really was delicious. I’m always a little torn between feeling like a cheater (because I actually DO eat normal things from time to time at present) and asking for special low protein menue on the other hand. Have you ever felt like this?

Pleeeeeease send me some good thoughts or motivation. I really want to go back to diet, get better levels, but I need to get into this whole strict diet thing deeper again. It’s always everything about making it begin, about the first steps, once I’m into it, it’s much easier, since then I’m proud, I got everything under control, so I won’t spoil my level easily and thoughtlessly.

So in need for your help, so much mess,


Katie xxx