2 thoughts on “latest phe level”

  1. Wow! I would like to share with you first, I am new to your blog today and I was drawn to tears with such a big sense of hope and relief after reading everything you have posted. I am a single mom in California with two little guys, a 5 year old PKUer (Tucker, classic PKU and on a VERY VERY restricted diet, only allowed 3g of protein a day) and an 8 year old non-PKUer (Colton). My little Tucky is a very big challenge, and living in the states makes it so much more difficult because with PKU being so rare here it gives us very limited resources apart from the Internet. I get most of my information from the Internet, where I can access sites from other countries (mostly the UK and Australia). My son has high phe levels constantly, so I know the challenge it must’ve been for you to actually be able to be told that your levels are too low! Lol. I’m sure you hear this from your parents and family all of the time, but as a mom myself I AM SO ASTONISHED AND AMAZED THAT YOU HAVE SOUGHT OUT ON THIS QUEST TO HELP OTHERS WITH PKU BY SHARING YOUR OWN PERSONAL STORIES, AND TIPS AND TRICKS TO GIVE OTHERS IN THE PKU COMMUNITY ADVISE AND AN ENORMOUS LEVEL OF SUPPORT! I HOPE IT IS OK TO SAY THIS, BUT AS A PKU PARENT MYSELF I AM SO PROUD OF YOU!!!! I hope you know how special you are and how big your heart must be to take the time to put so much info and support out there so selflessly. PKU on its own is such hard work, and it sounds like you challenge yourself to overcome obstacles and set high goals. So the time you put into your blog/website is so very appreciated by many. You are the kind of person they have created the ROSE AWARD for, and I truly hope that you receive this high honor and recognition in your lifetime. I am going to nominate you this year. I really hope that you are told thank you and recognized for you accomplishments in our PKU community by the ones you are helping so much and so often – every day! I am following your blog now and I will visit your page often. I honestly can say that I am still standing, in one piece, and that I am so strong for my son because of the PKU children, teens, and young adults, and all of the PKU parents that share their stories with the sole, and absolutely selfless goal of helping those like Tuck and I, whom are struggling with the enormity of work and difficult emotions that come along with being a PKU parent and trying to manage such a restricted diet. I fight every day for my son to feel “normal” and happy, and to accept his PKU. We cant change it, so I teach him to just own it and to show everyone how strong and proud he is of his PKU because of the walls he breaks down every day, that are put up by the difficulty of ensuring that he doesn’t let his restricted diet cause him to live a restricted life or feel down and that its not fair he cant have what his brother eats. I have finally been able to accept in my heart that my son is not sick or “different” in a negative way, but actually part of a very small group of people that are very blessed and very strong. I’ve noticed that my son overcomes so many obstacles that even adults can’t, or struggle with at the least, and he is always very happy and optimistic because he has to deal with such a big challenge every day with his diet and other medical “conditions” brought forth by his restricted diet causing him to lack the important nutrients the rest of us get from protein. It is amazing how many things the human body gets from our foods. Again, I just had to say thank you and share a little bit of Tucker’s story to let you know that these things you are doing may seem small but they are a very big help to people like me. You have helped us to feel like we are not alone out here with so few PKUers around us.

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    1. Nicole,
      Thank you so much for your lovely message. It brought tears to me eyes! its wonderful to meet you and thank you for sharing your story with me.

      Thank you for following my blog and I hope to hear more from you and about your children. Has tucker ever met anyone else with PKU? where abouts in California do you live? If you would like to email me I may be able to put you in touch with more pkuers in your area. Also please feel free to keep in contact with me via email if you need anything or have any questions. If your on facebook please feel free to follow my fan page and join my facebook group. world wide support group for Phenylketonuia. We have many PKUers from all over the world!

      I look forward to keeping in touch!

      Amanda

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