Between my husband’s graduation, a cross-country move and a new PKU treatment, the last few months have been exciting and eventful for me! We have recently moved from our four-year home in Tempe, Arizona to Columbus, Ohio, and it has been quite a journey! In April my husband passed his dissertation defense with flying colors.… Continue reading Huge changes + Kuvan news
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!
Dealing with the PKU diet as a family note: this post was originally written for and posted on the Metabolic Disease Foundation’s blog about PKU One of the biggest concerns I have heard when talking to parents of PKU children, is how their child will deal with being different. Today I will share my perspective, writing… Continue reading It is OK to be Different!
Alissa is a special education teacher, a 5k runner, and a world traveler. She also has classic PKU. Here is her story. What was it like growing up with Classic PKU? Growing up with Classic PKU was just like anyone else growing up, I just ate differently. Classic PKU, my special diet, my formula, and… Continue reading Interview with Alissa Doerner: A Classic PKU Story
I love how the internet and social media allows so many of us connect and share our stories and get to know each other. It has made me aware that everyone’s experience with PKU is so different. As someone who has been on diet my whole life, I realize my story may be different than many others, but it’s my story and it’s… Continue reading My PKU Story
My husband and I are headed out for a weekend trip to southern Utah. In addition to packing some food to save money, I of course have to pack my formula. The red thing is my cooler with ice packs. I like to pre-measure formula for vacations, that way I don’t have to bring my… Continue reading Road Trip!
Kevin Alexander just posted on facebook about travelling with PKU and I realized that I have some good stories that need to be shared! Getting through airport security with formula can be interesting. I bring my formula for the day in a little cooler. Now, as we all know, we are not allowed to bring… Continue reading Travelling Stories
I am packed and all ready to go on a three week tour with my choir, BYU Singers, to England and Wales! Traveling with PKU can have it’s inconveniences, but it’s nothing I can’t handle. While everyone else is bringing one lightly packed (insofar as possible) suitcase, I get to bring that, as well as… Continue reading Bon Voyage!
Committing to the diet is difficult, but totally worth it. Sometimes I think of the words of the song Barbra Streisand sings in Yentyl, There Are Moments: There are moments you remember all your life. There are moments you wait for and dream of all your life. This is one of those moments. This past… Continue reading This Is One of Those Moments