PKU Awareness

Since today is the last day of PKU Awareness Month, I wanted to do a blog post and share it on facebook to remind everyone I know and just get the word out about this rare occurence and how it affects real people...people you know. If you have time please be sure to read as many of my posts about PKU as you can, as well as the description on the right side of the page. Even if you've already read it, read it again. Everyone who cares for my Carson or anyone else with PKU needs a reminder once in a while.

I want to reflect for just a moment on the purpose of this blog. When I first started writing on this blog a few years ago, I was desperate for a connection, to find anyone out there with whom I could relate because I felt like we were so alone. That was a successful endeavor. I have happened upon several blogs of people and families who also deal with PKU. One of the first people to send me a message was Shane Austerman. He and his wife and son live in Iowa, many miles from my home here in Alabama, and their son, only 4 months younger than Carson, also has PKU. I have connected with this family, with Jackee, I follow their blog, we have communicated by email and send Christmas cards each year. For that, I am so thankful. To have other people's experiences to read and to share means so much to me.

My further mission is to help other people who find my blog, those who are like I was, or like Shane and Jackee were, looking for a connection while feeling so isolated from the world. PKU is rare but not to the extreme. I have seen different stats, some say 1 in 14,000, some say 15,000, are born with it each year. In a country with around 300 million, that can add up to quite a few people. However, we are so spread out over this 3,000 mile wide stretch of land that it can be difficult to find someone who lives close by who might have it. Thank God I have found someone! The Lord in His infinite wisdom brought us together with the Martin family, who lives not only in the same state, but the same county as we do! My cousin Amy graduated high school with Julie, whose son is only 6 weeks younger than Carson and also has PKU. Not only that, but Julie's father worked with my husband's father! Isn't that amazing?! Amy is the one who got us together by asking if I minded if Julie had my info, and now we both have someone just a hop, skip and jump away. I don't know what I would do if I had not met Julie. I hope that Carson and Noah will one day say they feel that way about each other. I can only imagine how they will feel when they get older and realize this. They are so blessed to have each other.

This blog has since evolved from a searching point and a way to express my feelings about my son's PKU to sharing food ideas and recipes and other discussions. I also mostly share our big adventures and fun times as well, so that our family and friends and others who happen upon our blog can see what a normal and fun life Carson has. By the way, he is SO spoiled rotten!



Not only has the blog evolved over time, but so has our family. On March 16, 2012 we welcomed a new addition to our family, Maggie Amelia. We spent so much time in wonder as to whether or not Maggie would also have PKU like Carson. There was only a 25% chance. But that was Carson's chance as well. Only we didn't know about it until we had Carson. There was no way to know that. We had no known reason to have our genes tested. Who knows what kind of recessive traits are lurking in their genes? Anyway, we were prepared this time. We knew what to expect. And I knew that if Maggie did have PKU, I knew exactly what to do, how to care for her. My fear was what I would do if she didn't have PKU. I don't know how to feed a non-PKU baby! I am used to doctors and dieticians and special books telling me what and how much of things to feed Carson. Who would tell me what and how much to feed Maggie? Seriously, I need to know, because by the grace of God her tests were in the normal range, meaning she indeed does NOT have PKU like her big brother Carson. Instead, little miss Maggie has a club foot. Why is it always something with us? She has to have her leg put in a cast every 2 weeks until the doctor thinks her foot is finally straight enough. He is hoping that will be so in another month. And just like with PKU, this too is our "normal".

Since Maggie is non-PKU, I have been debating whether or not to change the title of my blog. I don't have enough time or energy to keep up 2 different blogs, so I don't want to go that route with it. Even though Carson is the only one who has PKU, we all live The PKU Life with him. And if I change the name so it does not include PKU in it, others out there who are searching might not be able to find it. So I don't think I want to change the name for mainly that reason. I want to write as much about Carson as I can, but I want to write about other events in our lives too. What do you think?

Now for one last section I will describe Carson's current diet and PKU-related info. He will be 3 years old this August. His current phe allowance, or prescription, is 325mg per day. We have a book that tells how much phe is in as many different foods as you can imagine, so we just have to weigh or measure his food and figure how much phe is in everything he eats. To get the protein he needs without phe, he drinks his special formula. Currently he is on Phenex-1 at 122 grams of powder for 24 oz. He drinks roughly 3 8oz cups of this milk per day. He likes to drink it out of these sippy cups that have straws. This is the most important part of his diet because that is how his body gets the protein it needs. He has to eat so much low-protein food to make sure he doesn't get too much phe. To give you an example of his menu:
Breakfast: his cup of milk, 1/2-3/4 cup Chocolate Cheerios, sometimes on Saturdays we do lopro pancakes using Cambrooke's MixQuick and sometimes I might add blueberries or chocolate chips
Lunch: a Cambrooke Pizza Minipocket and Pringles or other chips; or 1/2 can of Bruce's Yams and a cup of applesauce; or a lopro grilled cheese made from homemade bread and Cambrooke cheese slices with chips; or tater tots
Supper: lopro pasta with Ragu original spaghetti sauce and either broccoli or garlic-seasoned cauliflower; sometimes I make stroganoff and put it on his lopro pasta; or sometimes he'll eat rice made different ways; homemade lopro roll (sometimes)
Snacks: his cup of milk, Rice Krispie Treats, or homemade lopro chocolate chip cookies (Cambrooke's Butterscotch chip cookie recipe is what I use but I use 1/2 cup of dairy-free chocolate chips), or a banana
When we go out to eat he likes Mexican food: rice and chips and salsa, or spaghetti squash with marinara at Ruby Tuesday. He also will eat broccoli just about anywhere we go.
The weirdest thing about Carson and his diet right now is that he will NOT eat French Fries or potatoes in any form except chips or tater tots!

So you can see, Carson is very picky right now, and he does have to have some special foods for his diet, but he can also eat alot of other stuff too. We just have to be reasonable and make sure to measure everything so he doesn't get too much phe. And I try to experiment alot, so there are lots of things I didn't list that he might eat.

I hope this helps to encourage somebody new to PKU that it is going to be okay. I also hope that it reminds others that everybody has something different going on in their life. This is the hand we are dealt, but each of us have a different hand and a different way of dealing with it. This is part of how I deal. I share. And I thank God for the opportunity. I thank God for my awesome husband, my gorgeous, precious, perfect children, and our wonderful life.