Family Vacation!!!

Warning – This is kind of a long post with a lot of pictures!!
My parents took my whole family on a trip to Mesquite!! It was so much fun. Our whole family was able to come except Mercedes, we missed her. We left Sunday morning, May 1st and got there around 4:00. I was starting to think maybe we weren't suppose to be going because when we left Ft. Green we drove up to check on our sheep and of course they were out so Mike got them back in the field and then we were off……. or so I thought. When we got on the divide just about to drop down into the canyon there was girl pulled off the road broke down. We had to come back to Ft. Green to get some things so Mike could fix her car. By the time we finally got on the road the girls had already been in the car for an hour!!! Anyway we made it down there safe and sound!
When we got there we ordered pizza in and then went outside and ate on the lawn. It was SO nice to be outside and not freeze! Now for the those of you who are wondering, no my girls cant eat pizza but I brought down the things I would need to make them there own low protein pizza and then we had a lot of yummy fruit and green salad to go with it!!

My mom and dad!!

After dinner we played in the water and out on the lawn.

Brooklyn and Taylor watching Michael, Justin, Mike and Corbin play this game, I forget what its called but it was pretty fun.

Bless Brandon's heart he played duck duck goose with the little kids, they thought it was great!

Taylors first time playing tennis!

The next morning we got up and made some breakfast for the girls then my parents watched them for us so we could go out for breakfast. When we got back my parents took all of us bowling! Now im not the best bowler in the world however I thought bowling with Nicole id do ok…….. um no, even though she is blind she still beat me, without bumper pads! Hehe

I have to document my moms strike she was very proud!

After bowling we went back to our condos and BBQ some turkey! Of course I brought low protein meat substitute down for my girls.

After dinner my parents took us to see Rio in 3D and somehow none of us got any pictures in our cool 3D glasses.

Here are some pictures of us swimming

The water was cold so that's why we are in the hot tub and why im not in the pool!!

I don’t know if you can see the look on Nicholas's face but it shoes how cold it was!

We had so much fun. I want to go back soon. A big thanks to my parents for giving us these cherished memories!! I love you guys so much!

Our life with PKU

What is PKU?
PKU stands for Phenylketonuria (PHE-NYL-KE-TON-URIA). Phenylketonuria is an inherited disorder.  People who are born with PKU are normal in every way except to stay healthy they must follow a strict diet which limits phenylalanine, a common part of most food. People with PKU have an inactive liver enzyme.
Phenylalanine is only one of the many amino acids which are joined together to form proteins. Normally, when a person eats foods containing protein, their body uses the amino acids from that protein for growth and repair of body tissues. Often we eat amino acids in excess of the body's needs. These excess amino acids are chemically changed by enzymes into other compounds or used for energy. Since individuals with PKU are missing the enzyme for normal phenylalanine break down, the excess eaten in foods accumulates in the blood and begins to damage the brain causing severe mental retardation.
If blood phenylalanine levels stay too high over a period of time, the damage to the developing brain is severe and irreversible. The harmful effects of PKU can be prevented if a diet low in phenylalanine is started in early infancy and maintained throughout life. The phenylalanine restricted diet is the only way to bring blood phenylalanine levels down to a safe level. At these safe levels, the brain can function normally and the person with PKU can learn easily and have stable emotions.

What are the odds?

PKU is a recessive trait, meaning both parents of a child born with PKU must be carriers. About 1 in every 15,000 babies born in the US has PKU. Only 1 out of every 50 people carries the gene. The chances of 2 carriers meeting, marring and conceiving a child is 1 in 2500, and the chances of each child they bear having PKU is 1 in 4. I guess we beat all the odds! Hehe
 Treatment for PKU…
The treatment for PKU is a strict, very low protein diet. The diet completely excludes any kind of meat, dairy products, nuts, artificial sweeteners, or even protein substitutes, like soy. Vegetables, fruits and specially made low protein foods are the staple. A special medical formula provides the person with PKU all the protein the body needs without phenylalanine. If started in the first weeks of life the diet is very successful at allowing a healthy life.

As im sure most of you know we are a family of 5, 3 who do not have PKU and 2 who do. A lot of people ask us questions about PKU and how we deal with and feel about PKU. Its very hard to explain our day to day life living with PKU because yes we (including my 2 girls with PKU) live a normal life however our normal is very different from your  normal….. I have thought a lot about how to go about blogging about this, do I just explain PKU, do I sugar coat things, do I dwell on the negative…… I guess all I can do is tell you my story and try to be as true to my feeling as I can, that means the good and the bad. It will take alot of different post to explain everything, im sorry , they will be long, and probably confusing but hopefully when I am done you will have a better understanding of our “normal” life!
So here is my story…. I'm sure most of you have never heard of PKU. The first time I really paid attention to the word Phenylketonuria (PKU) was when a lady named Fay who works for the state of Utah tracked me down at my parents house. It was June 4th, 2003, my 21st birthday! Mike was going to take me out to dinner for my birthday and I had made plans with my parents to watch Taylor for us. I remember being at my parents and hearing the phone ringing in the background while I was holding my new, tender, perfect little baby girl! Someone handed me the phone im not sure who it was but I think it was my mom, and that’s when my world fell apart. Fay introduced herself and then got right to the point……. “Your daughter Taylor has Phenylketonuria (PKU). This is a VERY serious metabolic disorder that can cause severe mental retardation. At this point I felt like there were 2 of me, the one trying to play it cool and the other completely losing control. She TOLD me that me, Mike, Taylor and Taylors grandparents (if they could) were to meet at some building right by Primary Children's Hospital ( I don’t remember the name of the building) at 7:00 am the following morning. I know she told me a lot of other things because I had to keep asking her to repeat herself because I was crying so hard I couldn’t hear her. After we hung up with each other I had to tell my family what was going on, I was a MESS and im not sure they really understood me through the tears but they got the jest of what was happening. Now it was time to call Mike….. this was one of the hardest things I have ever done because I knew EXACTLY how he was going to feel. We cried a lot together and as a family.
The next morning meeting with our new PKU “team” was very over whelming. There were so many doctors, more test, a lot of questions and  a lot of tears. They helped us better understand PKU and then the teaching began….. it was like going back to school again, really, only I keep thinking I can’t fail this, and who knew my algebra teacher was right, I really will use algebra in my life and I am awful at math. Hehe On a funny note when our dietitian ask me how I was at math and I told her REALLY bad you should have saw her face! I didn’t think she was going to let me take Taylor home and just so you know it took about two years for that look to leave her face! She made sure I could take care of my little girl before the smile came back! Anyway…… the next few months were like a blur id like to say there were a lot of ups and some downs but really for me there were some ups and a lot of downs. The blood work that we had to do on Taylor (yes that’s right I said we not the doctors)  was REALLY hard to get down, and to not cry through the whole process. Let me explain this a little, you have a very little foot that you have to slice open about the width of a pencil eraser and then squeeze the foot backwards very hard so that the foot touches her shin because for this type of blood work you need enough blood to fill up 3 big dots on some special filter paper and to get that much blood out of a little tiny foot, well that’s not very easy! The measuring of EVERYTHING  she ate, the timing of how long she nursed. The pumping to keep my milk on days I couldn’t nurse her at all due to high levels. Still trying to learn all of the rules and the most important…… trying to be ok with the fact that your perfect baby is in a sense not perfect.

As time went on things definitely got better. We have learned how to deal with PKU. We have learned to be very prepared for the unprepared, I had no idea how much life revolves around food! Our life with 3 little girls 2 with PKU is normal, challenging and different from yours but good. In my next post of many to come about PKU I will try to explain why our normal is a tad different. I hope I have intrigued you to follow our story and learn about PKU.

Dance Competition

Taylor and Brooklyn had a Dance Competition on April 9th at Maple Mt. High School. Taylors age group took three dances up and Brooklyns age group took one. They both did so good!

Here is the team (the ones who stayed for awards anyway) waiting to hear how they placed!

Taylors class

Hip Hop - 2nd place

Jazz - 2nd place

Lyrical - 3rd place

Brooklyns class

California girls dance - 2nd place

Shaylee was so good but by the end of the competition she was a little sleepy! I thought it was so cute :)

Spring Break!!!

For Spring Break my friend Cassie and I decided we wanted to take our girls and do something fun. Cassie has 3 girls and I have 3 girls so it is pretty fun when we get together!! Her oldest daughter is the same age as Taylor, her next is the same age as Brooklyn and her youngest is a couple years younger than Shaylee.

We took the girls up north and did some shopping for summer clothes!!! I was so excited to see shorts and flip flops! Summer can't come soon enough :)

For lunch we went to Red Robin. That is my girls favorite place to eat! 

Now for the really fun stuff!!! We took the girls to Jumping Jacks!

The big slide was a favorite! I don't even know how many times they went down this thing....

after awhile I had to stop watching them. They were doing all sorts of  tricks and I was getting scared they were going to break an arm or something :/

Now just to make it clear, I hate these stupid toy houses. I swear they have some short of power that  calls to Taylor!!! Whenever she sees them she doesn't stop begging to try and get a toy because "it would be so easy".  I have told her so many times they are just a rip off and that it really isnt that easy to get a toy. Well I gave in and let her try. Look at the concentration as she tries to get the stuffed animal.....

.....and now, the not so happy look that maybe mom is right!!

We had a very fun day!!! Thanks Cassie :)

(Taylor, Brooklyn, Paeton, Kaecee, & Shaelynn)

And here is Shaylee. She found this game and feel in love!!

Feeling sad :(

So for the last few days my little Taylor has been pretty down. For the most part Taylor does very well dealing with the hand she has been dealt but just like everyone she has her days where she is just mad! Dealing with PKU is hard enough for an adult to understand and be ok with I can't even begin to understand how she feels dealing with it at such a young age. Taylor is such a strong girl and I know she will bounce out of her sadness but nothing helped like the flowers my parents sent her!!!

Taylors grandma and grandpa had balloons and flowers sent to her at school to cheer her up and believe me the smile on her face when she came carrying them out of school was priceless!!!! She was SO HAPPY! Thank you very much grandma and grandpa you have no idea how much that helped her!

They were the prettiest flowers :)

I wanted to do something fun with Taylor so we grab Julia and Keldon and went to Nephi for some dinner and a movie. As you can see they had a great time at dinner!!! However the movie was a different story :(

We went to see Rango....... that was the worst movie I have seen in a VERY long time!!!! Don't wast your time or money!!!!! Anyway Taylor and Keldon thought it was great so I guess sitting through 2 hours and 2 minutes of pure H*?! was worth it! hehe

Here is a picture of the kids after the movie. Thanks Julia and Keldon for the fun night. It sure helped cheer Taylor up :)

Happy Birthday Shaylee!!!!

I can't believe my baby turned 3!!! On Feb. 27, 2011 Shaylee turned 3 years old. I can't believe how fast time goes by. For her birthday all she wanted to do was go wimming. The day before her birthday party I went down into her bedroom to make her bed and she was down there dressed in her swimming suit and she told me she was ready to go! She wasn't to thrilled when I told her we still had 1 more day until swimming. Its funny how long 1 day can be when your a kid!

Shaylee is such a fun little girl to have around. We have been very blessed to have her in our family! We love you Shaylee!!!

 

She was excited about her gifts!

We gave here a bike, some shoes and an outfit. She loves her bike she has been riding all around my kitchen! I think i might as well take the clothes and shoes back. Shaylee is quite funny about clothes and these ones don't seem to be making her to happy.

Finally, its time to go wimming!!! I had to have a picture of her in her swimming suit with the boots! So stylish. :)

Happy Birthday Bugs! We love you

Did somebody break a tooth?

On February 16th I got a phone call from the elementary saying that Taylor had fallen at recess and bumped her mouth. They told me they had got the bleeding stopped but that maybe i should come take a look at her. I had been cleaning all day so i had just gotten out of the shower and wrapped my hair in a towel when they called, of course i didn't want to go to the school looking like that so I sent Mike not thinking her injury was going to be that bad. Needless to say when Mike showed up at home with a teary eyed Taylor at his side I was not expecting to see what she had to show me.....

Yep that's it, she broke her front tooth right off! She had been playing with some kids at recess (a game kind of like tag) and when one of the little boys grabbed her by the arm and leg she went down hitting her mouth on the sidewalk!!!! OUCH! For about 10 seconds i handled it ok but then i realized it was a permanent tooth and my stomach dropped!! If you know me, you know that teeth are a big deal to me and i was kind of worried about how it was going to look after it was fixed (I know that shouldnt have been my worry but it was one of them) i also didn't want her to have to go through a root canal and all of that fun stuff. I called her dentist and he wanted to see her that night. So we waited the rest of the day and as you can imagine it was painful for Taylor. Everytime she opened her mouth or tried to eat or drink it would hurt her tooth and her

mouth just plain hurt from hitting it so hard :(

She was so brave while Dr. Conner fixed her tooth! She loves Dr. Conner so that's always a plus when pain is involved!! He took xrays of her teeth and so far it looks like the tooth isn't going to die so for now no root canal! He fixed her tooth although he said later down the road when she is older we will need to put a crown on it.

Here she is happy as can be! She made me promise her that i wouldn't make her go to school until her tooth was fixed so she was very happy when Dr. Conner finished and it looked good as new!!