Life's a Breeze: Patient Power

Saturday, February 25, 2012

Patient Power

I found a great website called Patient Power. It has a lot of PKU (and other diseases) information. There motto is "Knowledge can be the best medicine of all." Not only is it educational but also it has a wealth of stories about people with PKU. Another thing that is really great is that you can watch the story, read the story or listen to the story. So for my husband who refuses to read, this is especially great! I just read an interview between a young adult with PKU and a doctor who specializes in PKU. Its called

PKU: 4 Keys to the Foundation for a Healthy Life

It was a great interview that gave two perspectives on raising a child with PKU.

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About Us

We are the happy family of three plus two dogs. Adam and I have been married going on eight years! Hard to believe. We decided to wait to have children, we played hard and enjoyed our dogs. So when we finally got around to try to have kids we had some difficulty, but finally with a little help, last year we had a daughter, Breeze Marie Porter. She has been the most wonderful addition to our lives. There is no other word to describe her but delightful. She has been a good baby since day one. I think that my step sister Kelly summed it up nicely when she said that "God give the happiest babies to those who will have other difficulties to deal with".

Our difficulty came to us in the second week of Breeze's life. We found out she has PKU. So in addition to adjusting to being new parents we also had to learn about this rare genetic disorder that we gave our child. I had to use the pump I had no intentions of using unless I had a night out with the girls and I had to learn about the millions of bottles and nipples out there that had no resemblance of my boob what so ever. The hardest part was I had to take Breeze off my breast and give her a bottle, with hopes she would come back. Needless to say that week was hell. Thank goodness for grandparents and we had two sets here. We all had Bottle Use 101 in our kitchen and learned a few things the hard way. Like do not open all the packages of different bottles at once and expect to get them back together, just throw away and start over. Do not boil the nipples for too long, they will not work properly. Do not trust your bottle warmer, it will make the milk wayyyyy to hot. I'm still trying to find the humor in the remark about my resemblance to a milking cow while double pumping(thank goodness for the pumping bra!) But all you can do when life throws you a curve ball is have a good cry, or maybe a few, throw a temporary pity party, have a drink, or maybe a few and get on with it. There is nothing in life that is going to keep this family down.

Note to self- If today sucks, there is always tomorrow.

Saturday, February 25, 2012

Patient Power

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Sites I have found useful