Sunday, October 11, 2015

Unanswered Prayers

It's hard to believe that this girl is 4! When we first found out Breeze had PKU, the dreams of the future became clouded with fear and uncertainty.This unknown 'scary' thing indeed rocked my world, some hard, but now, looking back thus far, I can see it has filled our life with more blessings than hardships.

I am so,so, thankful. 

I have an amazing support team at The Children's Hospital, that has given me amazing opportunities just in this year alone! I've  gone to an all women's camp, rode my bike over mountain passes and now to a low protein cooking class in Napa valley. As a Mom I've learned we all have our struggles, all we can do is our best with what God has given us, and support each other through it. 

Breeze and I have new friends!

 I have met amazing PKU moms who live minutes from me! (Which really is such a blessing) and Breeze has fellow PKU friends.

She can learn from this disease

I hope for Breeze to learn that PKU is not something that defines her or holds her back in life. But sees it as a a spring board to embrace all life has, because, it is in fact a gift. I hope she learns to use it as an opportunity to give empathy and compassion to those around her. We all have struggles in life, it is how we use those struggles that makes all the differences.

I can learn and teach(hopefully!)from this disease

 I am blessed beyond measures all the time by something that is a struggle. I hope as I Mom I can teach my children many things, but one thing for sure. Always thanking God for the many blessings in life, but probably mostly, for the unanswered prayers.

Wednesday, December 3, 2014

'Welcome to Holland' In light of National PKU day

Being a first time Mom is foreign enough. But to also find out your child has PKU, it was news no parents are ever prepared for. Today 3 years later PKU is part of life. Is it still hard, hell yes, but I like many other PKU Moms out there, are learning to 'love Holland'



Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, August 22, 2014

How much Phe?

There is a new website called How Much Phe?It is a God send for anyone with PKU and caregivers. It literally puts all food phe values at out finger tips with an internet connection. No more calling fellow Moms while on vacation and asking her to look up values as I stand in the grocery aisle! But the survival  of this information needs our support. They ask for and annual fee of 45 dollars.  But we need more than immediate family support of this. If you are extended family, and or friends of pkuers we need your help to ensure this priceless resource is available for years to come. Please read the letter below and consider paying for a membership or donating money through

Copied and pasted from How Much Phe 

How Much Phe is an online subscription service which provides access to the Phe content of foods as contained in the Low Protein Food List for PKU and's Baby Food List. The site is a service of National PKU News. The revenue from How Much Phe will be used to fund PKUNews' Food Analysis Program and general operations. Our full Terms of Use are here.

A letter from Virginia Schuett:How Much Phe?: The future of the Low Protein Food List for PKU

Hello Everyone,

I want to encourage everyone in the PKU community to subscribe to our new How Much Phe? service.

The team who developed the program is thrilled that our hard work has led to this moment that we have all been waiting a long time for: the moment when we can easily and quickly access every food item in The Low Protein Food List for PKU (all 7,000+ items) from any mobile device that connects to the internet.

I know this is my dream come true and I think it will be yours when you try it.

I would like to convey to you a very important message: How Much Phe? is not just a very helpful new online tool, the future and survival of the food list really depends on subscriptions to the How Much Phe? Program!

The money from the program will be used for updating and adding to the food list and expanding the functionality of the service (for example, diet management tools). We just cannot go forward into the future with the current method of updating and maintaining the food list, which I have assumed responsibility for over the past 35 years, and selling the food list alone as a printed book does not bring in the income needed to support this activity.

Through the subscription service, which will provide an annual income that can support the lab analysis of foods and provide the funds for updating the database, our precious resource will be preserved and updated for people who need the low protein food list now and into the future.

The survival of the Low Protein Food List for PKUis a matter of health and quality of life to PKU patients and families. As part of the community that benefits in so many significant ways from this ongoing effort, we urge you provide to your support by subscribing today. Please help spread the word about this wonderful new resource! I hope everyone will subscribe to the new program and will experience the thrill of having all of the food list data at your fingertips at all times.


Virginia Schuett
Director, National PKU News