Family Trip

This is the second year we have went to Mesquite for a family vacation. My mom and dad take me and my brother and sisters and our family down to stay for a few days and we LOVE it!!! It is so much fun. We spent a lot of time playing in the pool or just out in the yard of the Highland Estates where we stay. There is such a nice area to gather outside and just hang out. Just fyi I have A LOT of pictures…………….

My girls hanging by the pool :)

We had lots of cannon balls into the pool and my favorite was Mike, Michael and Justin doing it at the same time.

HEHEHE look at that splash!!! I love it.

The next day we went bowling and to a movie. And just played a lot more outside. The morning we left we swam for awhile and then had some lunch and headed home. We had so much fun! Thanks mom and dad for all the fun memories. I love you more than you’ll ever know!!!!!

School Filed Trip

The girls both got to go to the Bean Museum for a school field trip. We had so much fun. I was able to be with both Taylor and Brooklyn all day.  First we went to the museum and looked at all the animals and then we went to a park for lunch and the kids got to run around and play for awhile. After lunch we went back to the museum and seen some really cool animals! My favorite was the tortoise it was so cute! We also got to pet a really big snake. That wasn’t my favorite but the girls loved it!!!!

 

Dance Competition

Taylor and Brooklyn had a couple of competition this year. They both did so good. We were very proud of them!!

Good job girls!!! I sure do love you :)

Easter

We had a very fun Easter. Me and the girls went over to my mom and dads to color Easter eggs.

 

We had lots of fun!! The next day was the Easter egg hunt at the park. The girls love this one because grandpa Larry lets them help him get the eggs ready to hide!!

 

The Easter Bunny showed up for the hunt!! Shaylee was pretty scared of him at first but by the end of the hunt w convinced her to have a picture with him!!

That afternoon was our family get together at grandma Dixie's!! We do this every year and I love it! We had a big Easter egg hunt and then roasted hotdogs and marshmallows around the fire. It was a very fun day hanging out with my cousins that I don’t see near enough!!!

 

On Easter Sunday the girls got up and hurried to see what the Easter Bunny had left for them before we went to church. After we got home we talked with kids about what Easter really means. Later that day we went up to grandma Mary's for dinner. It was a very nice Easter :)

Look what we are trying!!

PKU update:
In the fall of 2009 we were asked if we (Taylor and Shaylee) would like to participate in a clinical study for a new drug called KUVAN. First off KUVAN is a new prescription that is being study in people with PKU. KUVAN is the first and only prescription medication that helps some patients lower phe levels. Along with careful dietary management, KUVAN may help lower blood Phe levels more than the use of diet alone. However not all people with PKU respond to KUVAN, also KUVAN does not replace the diet it just helps lower phe levels allowing the persons taking it to eat more foods that contain phe.
When we were first asked to do this study I wasn’t sure how I felt about it for a lot of different reasons but mainly I was afraid that because not everybody responds to KUVAN and because I have two children with PKU that only one would be responsive. I know that I should have just been happy that there is finally something for people with PKU to use other than the diet but I couldn’t imagine not having both of my girls respond. I either wanted it to work for both of them or not work for either. I don’t really know how explain the way I felt but that was a big fear of mine, that and then just the fact that you are trying an experimental drug on your children is something very very scary!! However we decided that we needed to give it try!! Now when I first posted about “Our life with PKU” I told you I would be very honest with my feelings about living with this so……………….. I will be.
It was very exciting and nerve racking the first time we went up to University of Utah where the study was to be done. They explained that we would be expected to come up once (sometimes twice) a week until the study was over. They explained how we were to give the KUVAN and gave us a big book of papers and information. And then it began-

Our Study team (minus Dr. Longo)


There was a lot of pokes that the girls didn’t love but the nurses were so AWESOME so that helped a lot!!!!!
Here's Dr. Longo with Shaylee

I think I must have forgot to wash my hair that day :/ it looks awful!!!

Brooklyn was such a comfort for both of her sisters! I don’t know what they would do without her!!

So through out the trial they do not let the parents know to much (nothing really) about the phe levels because they want you to keep feeding them how you normally would instead of trying something to lower the phe levels. A little over half way through the trail Dr. Longo said something that I was really not wanting to hear. He said that as of that time it looked like only one of the girls was responding. I was so upset but I tried really hard to smile, I didn’t want the girls to think something was wrong. Like I said I tried to smile and I did a really good job of it until we got out of the hospital and to lunch and then I lost it, the poor waiter wasn’t sure if he should inturped my sobs to ask me what I wanted to eat or just come back later. hehe I wasn’t doing so good but after I had my melt down I pulled it back together and we finished the trial. After the month was over a girl named Krista called to let us know the results of the study. Sadly the girls weren't responsive to KUVAN. That was really hard to hear. I didn’t realize how much hope id put into KUVAN until she said it didn’t work for them.
I said I would be true about my feelings so here is what they were. I think that from the beging, meaning the first day I ever learned about PKU I was told “don’t plan on a cure. PKU is a rare disease there for the drug companies aren’t going to make a lot of money even if they found a cure so not much is being put into finding one.” In my mind that was that I really had no hope of cure and in a lot of ways that was easier for me. I wasn’t constantly hoping for some merical drug. Now I know that KUVAN isn't a cure for PKU, but when I was told the girls weren’t responsive to it I wasn't prepared for the let down of emotions I had. I though I was so much stronger than I was. I was sure I had build up my walls so noting could tear them down. Boy was I wrong! I think I was at my lowest point id had with PKU and to be honest the last two years have been the hardest ive had so far. Its really been a struggle for me and my family and im so thankful for my husband and our family and friends who help us stay on top of all the negative emotions!
Well that was part one. Here is part two! During the first study both of our girls got sick. When you get sick and have PKU it messes with your phe levels. Needless to say we never felt like we knew for sure how they responded to KUVAN because of the sicknesses. To stay in the trail (or be considered responsive to KUVAN) their levels needed to drop by 30% and although they didn’t drop that much they where close. so like I said, ive been having a very hard time dealing with PKU emotionally the last little while and one day after I had just got off the phone with Sharon (the girls dietitian) Mike found me crying in our bedroom. The past year the girls levels seem to be EVERYWHERE, high, low, and then high again and it doesn’t seem to matter how we try to bring them down….. or back up.. or down again, they just wont stabilize. Anyway Mike decided to call Sharon and they had a long talk and decided we needed to try KUVAN again!!! The company that makes KUVAN does what is called an in home study so basically we are doing just what we did before only this time no going back and forth to the hospital! And now they have decided that to be considered responsive the phe levels only need to drop by 20%. I feel like this time no matter the outcome i am much more prepared. Of course I hope they are responsive but if not I feel like we wont be wondering if its because they were sick, we will no for sure! So here are my girls giving it another try!!!

KUVAN comes in pill form but needs to be crushed and mixed with water or apple juice and taken with food. This is the first night they started!


Taylor is so good to make sure she gets all of the medicine at the bottom of the cup!


Shaylee is really good to get all of it too but you should see her face when she gets to the bottom, she sure doesn’t love it :(

And here's Brooklyn making sure everybody has a smile!!! She helps SO much!
We are about half way through with this in home study so I will keep you posted with the results!!

Dancing

Taylor and Brooklyn got to dance at the Spirit Review on March 8th. They were both excited to dance but its always scary to get out in front of that many people. They had lots of though and they looked very cute in their costumes!!

This year I tried putting Shaylee in the same dance class as Brooklyn but after a few practices we decided to take her because she was to scared during the practices unless I was right by her side and I really didn’t want to have to perform with her!! However I think I made a mistake taking her our :( Every time the girls have to perform some where we have to dress Shaylee up and put make up on her just like we do with Taylor and Brooklyn. Its cute as can be but it makes me feel bad that she wants to dance with them.

Here is a picture of my cute girls before we left for the high school

And of course we need a funny one!!

Here are some pictures of Brooklyn dancing :)

And here are some pictures of Taylor Dancing :)

Happy Birthday Shaylee!

Shaylee turned 4 years old on Feb 27th!!! I cant believe how fast time has went by. It doesn’t seem like my baby should be that big yet!!!! For her birthday she wanted to go swimming………. of course. We had cup cakes and root beer floats and opened gifts before we left to go swimming. She got so many fun new things!




This is a really bad picture I need a new camera very badly but I had to have a picture of her playing with her new Barbie camper!! She has had a lot of fun with it!! Happy Birthday Shaylee!!! It has been so much fun to watch you over the year and see how much you have changed. I love that you have such a spirited personality even though your to shy to show it most of the time!! We love you so much :)