A DAY in our life with PKU

It has taken me a REALLY long time to get back to updating on PKU. The last few months have been very busy!!! So this post is pretty much going to explain how a day runs for the girls as far their food goes. I hope it makes sense, I am not good at explaining how it works…….. sorry :/

So first thing in the morning, every morning we make “special milk” for the girls, or that’s what we call it anyway. Its actually an amino acid replacer. It comes as a powder and then we weigh out the prescribed amount and mix it with the right amount of water and there you have it…… “special milk”! Sadly the girls don’t particularly care for their milk and some days it’s a struggle to say the least getting them to drink it. I came across another pku blog and a mother was talking about the “special milk” and she couldn’t have said better how I feel. Her words were, “It’s a strange feeling to be extremely bitter and profoundly grateful for something all at once.”  I am SO SO grateful we have this medicine for the girls but I often find myself being upset about it. I wish so badly it was like most other medications and you could just take a pill instead of having to drink it ALL day long!! Anyway……. this is why their amino acid replacer is so important. They will take this medication for the rest of their lives, it provides them with over half of the protein they need to grow and develop each day but it has been modified so there bodies can metabolize it.

To illustrate, the minimum protein requirement for most toddlers is 16 grams of protein per day. My girls can have no more then 6 grams of protein per day and the rest has to come from their amino acid replacer. As Taylor and Shaylee grow they will still not be allowed more than 6 grams of protein per day, even though daily requirements for most people increase to the 50+ grams of protein per day into adult hood. People with PKU literally plan their day around what's on the menu.

Ok, I had a lot of people ask me after reading my last post about PKU why my math skills were so important when dealing with PKU………. now its time to explain that but first I need to introduce you to two of my best friends!!!!

A gram scale and the Low Protein Food List for PKU. Not a day goes by that we don’t use these. We would be VERY lost without them!

 

So this is how meal time works. The girls are each allowed so many milligrams of phenylalanine each day. Sadly their PHE (phenylalanine)tolerance is not the same. We can track their PHE intake two ways. One way is by keeping track of how many milligrams of PHE they eat, or the other way is by counting the PHE in exchanges. 15 milligrams of PHE = 1 exchange. We count in exchanges at our house because it seems to be easier teaching foods to the girls by the number of exchanges it holds rather than all of the milligrams of PHE it contains. So like I said the girls have a prescribed amount of PHE per day, they need to eat all of the prescribed amount each day but they can not go over the prescribed amount. Am I making any sense????? I sure hope so!!

So these is where the book, the scale and the math come into play. The book has everything put into different sections for me so its usually pretty easy to find what im looking for. When I find the food item im looking for I go to the column “Mg Phe/Gm. food” this is the information I really need to know. It tells me how much PHE is in 1 gram of food. Now I weight my food on my handy dandy scale and the I reach for my lovely calculator. Its time to figure out how big of a serving I want to give the girls depending on how much PHE I want them to have at that particular time. If the girls don’t eat everything I dished up for them I reweight the food and recalculate what they actually ate.  It would look a little something like this……

Let say for breakfast they wanted a banana and I gave them 80 grams but they only ate 54 grams this is what I would do

     80gm banana       =       54gm banana    

     30.4 mg Phe                              X

Multiply 54 times 30.4, then divide by 80 to get the amount of PHE consumed, then divide 20.25 (X) by 15 to get the exchange amount!!!! Now when its one piece of food they are eating its pretty simple to figure out but when you are making meals where different foods are added together like a casserole it can get kind of tricky. You would figure out the “Mg Phe/Gm. food” the same as like the banana for all of the foods going into the casserole get a total weight of the casserole, divide that by the amount of phe it contains and then divide that by 15. The number you would get would tell you how many grams of casserole = 1 food exchange……….. are you with me????? Like I said its confusing and I cant explain well!

So as you can see math has EVERYTHING to do with handling PKU. As far as how meal time works, we try to plan a head so we know how many exchanges we want to use that given day for breakfast, lunch, dinner and snacks!!! It doesn’t always go as planned because unexpected things like birthday treats at school, or the girls just needing a snack that wasn’t planned into the day always come up but we make it work!!!

I hope I explained good enough that you understand a little about how PKU is dealt with on a day to day bases. And I apologize for how long the post is!!

Taylors Baptism

On June 4th, 2011 Taylor was baptized and confirmed a member of the church of Jesus Christ of Latter Day Saints! It was such a special day for us and it couldn’t have been better. Taylor had so many people come to be with her on her special day. It meant so much to her having everybody there. She has been waiting for so long for this day to come. Taylor got spoiled with gifts from everyone!!!!! She got her very own set of scriptures, a case for her scriptures, some very pretty jewelry to remind her of her special day and the promises she made, a blanket, a journal, a baptism book, book of Mormon bingo, money, im not even sure that’s all of it!! Everyone’s love and support just made this day more amazing. We are so blessed to have Taylor and are so proud of the choice she has made to be baptized!

Doesn’t she look so pretty!! A special thanks to grandma Gilgen for fixing the jacket on her dress, it couldn’t have been better!

Don’t you love the cat in our family picture!

I LOVE this picture!! Mike did such a good job!! I love him so much.

Taylor with grandma and grandpa Gilgen

Taylor with her sisters, cousin Amy and grandma and grandpa Howell

Water Party

PTA water party!!! The kids earned a water by reading. The PTA set a goal a while back telling the kids if they logged the minutes they read on a ksl reading tracker that they would throw them a water party if they reached a certain amount of minutes and THEY DID IT!!! The PTA asked some parents if they could help out with the party. It was a lot of fun (even in the cold)! I wasn’t sure if they were going to be able to do the party or not because it keep raining and raining but we were able to get it done and it was a lot of fun!






One other thing that I have to mention…….. I am SO SO pound of Taylor! She was awarded a Math Olympics award in her class. That means she was at the top of her class in timed math facts! I didn’t know that she was getting an award so I wasn’t at the assembly when she got her trophy but my friend Tori took some pictures for me.

This is a picture of Keldon, Taylor and Bailee. All three of them got awards, we are very proud mamas!

Preschool Graduation!!!!

Brooklyn graduated preschool!!! I cant believe the year is already over. She has just loved school and wasn’t to excited about it being over. She had such an awesome teacher and made some really cute friends. I am so proud of her she has grown up so much over the year.

This is Brooklyn’s teacher Cassie. She is such a good teacher and so cute with the little kids!

In the program each of the kids got to sing a part of a song, Brooklyn’s part was how to draw the number 3! She did so good.

I can’t believe she is 8!!!

I can not believe Taylor is eight years old! The years have went by so fast. Taylor is such an amazing little girl, she has taught me so much. I love this little cutie more than words can say! She is such a blessing in our lives. For her birthday she wanted to go to Jumpin Jacks. We had family and a couple of her friends over for cake and ice cream and after that we headed up to Jumpin Jacks.

She got a lot of fun things for her birthday, a CTR ring, a baptism book, littlest pet shop stuff, a bridle (im not sure if that’s what its called) for her lamb, a gift certificate to the corner station, toys for out side, money and more!!!

I wish I had a picture of her looking at the camera with her cake! Hehe

The girls were pretty cute on the ride up to Jumpin Jacks!

Taylor and Shae thought they were pretty cool because they had the very same outfit on shorts and all!!! How cute are they!

The girls loved when my brother played with them. Michael (my brother) and Mike were pretty good sports when it came to entertaining the girls!

 

Happy Birthday Taylor!! We love you SO SO much!

May Day

For those of you who don’t know what May Day is, Taylors school puts on a little dance recital where each class does a dance. Normally it is outside on the lawn but due to the never ending rain they moved it into the gym this year. The theme was “Night at the Movies”. Taylors class did a dance to the Lion King. It was really cute. Sadly my camera is getting worse every time I use it and I didn’t get any good pictures. These are the best ones, isn't she a cute little lion!!

Spring Dance Recital

Taylor and Brooklyn had their spring dance recital on May 17. They have both worked really hard this year and and have done so good with their dances. We are so proud of them! Brooklyn's age group did a daddy daughter dance. It was the cutest thing ever and something im sure Brooklyn will never forget! I think Mike even enjoyed himself a little, he was a very proud daddy!