In my last post I shared that I have begun Kuvan treatment. Because some of my audience are people that don’t have PKU and are not familiar with Kuvan, I thought I’d take a minute to explain what Kuvan is and how it works. First, a refresher on PKU I general: in PKU patients, the… Continue reading Kuvan – the what and how
The conference is over. I’m in my hotel room after the last day of maternal PKU mentor training. My baby is asleep. It is a beautiful night in the beautiful city of Indianapolis. My heart is just filled with gratitude for being able to have this experience. First of all, a huge shout out goes… Continue reading NPKUA Conference
How is everyone’s summer going? Down here in Arizona we are surviving the three digit temperatures by being creative with indoor play (did you know couch cushions can entertain two little girls for hours?) and by going out of town a lot. 🙂 So far we’ve had a family reunion in southern Utah, a California… Continue reading To Indianapolis!
I was so excited when I got an email recently, inviting me to take this survey. This research is being conducted by Denise, a PhD student in Leeds, UK. Denise has PKU and is doing research on diet adherence. Hallelujah! I have written before on how passionate I am about this and how much I feel this needs to… Continue reading Research Survey
Our daughter was born August 11 around 9:00 pm. I had a wonderful un-medicated birth experience. She was 7 lb 10 oz. She felt so small to me! You forget how small babies are. She is so precious and we are happy she’s here. Elena loves her baby sister but definitely also needs a lot… Continue reading Baby Abigail
Growing up following the PKU diet, you get a lot of questions. You drink a special formula, say ‘no’ to many foods, and often eat different food – and people notice. It can be hard to know how to explain PKU, because it is so rare and it’s unlike any food issue most people have… Continue reading Explaining the PKU Diet
I was interviewed recently about life with PKU for this genetic testing website. They published it for National PKU Awareness day. Me You and PKU – Recombine