“The diet is difficult to follow.” “I know I need to drink my formula, but it’s hard.” “I’m so worried my child will feel that he’s different.” “I don’t like my doctor.” “I have really slacked on my diet lately and I feel super guilty.” “PKU foods are so expensive!” “I hate PKU. I wish… Continue reading Emotional Work and PKU
I missed PKU Awareness Day on December 3, but today I want to share a different side of the PKU story. This week I made rice crispy treats because, well, my daughter saw the holiday rice crispie box in the store and the pictures of rice crispy treats looked good. I’m also not a very… Continue reading PKU – People Are Actually Really Great About It
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
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
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!
Is my formula medicine or food? I recently got an email asking for help with motivation to drink the formula, when you don’t “feel the effects.” This caused me to stop and think — how should we be thinking about our formula? Is it like a medicine that makes you feel better like ibuprofin when… Continue reading The Formula Mindset
TRU: The Real You — Taking Control: What I’ve Learned From Having PKU
One of my best friends has this awesome blog about TRU Beauty to help women and girls come to know their true value and potential. This week she featured an article I wrote about what I’ve learned from having PKU. Check it out and ‘Like’ their facebook page!