Saturday, April 9, 2011

Zupa Pictures



My salad is the one on bottom, my sister's in in the middle, and a cup is on top.

Salad Paradise!

First off did you notice I changed my layout completely? Because I did. I like it a lot, and am currently thinking about changing my background every other month. There are a lot of cool backgrounds on Blogger.

Next item of business: My first (!) restaurant review! (Sort of... in an unprofessional they didn't know I was going to blog about them kind of way.)

A little while ago, probably a couple weeks ago my mom, sister, sister's friend, and I went to a cool restaurant called Zupas. It's this salad, sandwich, soup restaurant. When I go to restaurants most of the time I get a salad. It's what I can have, a lot of the time it's the only thing I can have. Zupas had this nice item on their menu called "A Create Your Own Salad". They let you choose everything for the salad! The lettuce type, the dressing, the toppings! I chose a green mix of lettuce, poppy seed dressing, and 6 toppings: olives, strawberries, cranberries, diced apple, pineapple, and avocado. They had a chose of meat or tofu but I chose not to. Without meat you can actually get 8 toppings! I couldn't find any others I wanted on this salad though. Which is kind of rare because I usually have more toppings than lettuce on my salad if i can help it. They gave each person a chocolate covered strawberry with our orders!!!! After finding a booth we took our cups and went to the soda counter. They had a normal soda fountain but Zupa's also had a bunch of flavorings! I filled my cup up with sprite then added raspberry flavoring... yum! (I also learned right about here that a little bit of flavoring goes a long way :) ) This restaurant was PKU heaven for me. Everything was delicious,and they make the salad in front of you while making it look advertisement worthy. I have some pics to prove it too. I would tell you what everyone else ordered but then this post would get boring. Let's just say everyone (PKU'er or not) was satisfied. I give this restaurant a 8 on the PKU Food Friendly Scale. (I took away 2 points because besides the create your own salad there was maybe 1 other thing I could have.)

Now I'm going to have a fantastic Spring Break! I suggest you do too (that is if you have Spring Break if you don't have a good weekend) ! I'll post a little about it in a not going to reveal intimate details on the internet kind of way ;) ! Bye!

Saturday, April 2, 2011

Sleeping Angels

Right now I'm babysitting. The house is quiet as the children are asleep. I've had difficult jobs before; this one was from hard. The kids were so good and everything went smoothly. I don't think I had a single problem! We played games and dressed up. They showed me their secret club and we had a mini dancing party. The most creative part was when I had them get on their movie star clothes (which turned out to be more like princess dresses and tiaras). I went downstairs and closed all the blinds, popped popcorn, and laid out a blanket for them to picnic on. We pretended they were famous movie stars attending the premiere of "Kung Fu Panda". Then it was bedtime. I don't think I've EVER had kids go to bed that easily ever before! I wonder... will it be this much fun when I'm a mom? I know there will be hard days. But will there be days just like this one? Full of fun and creativity, laughter and smiles? I know this blog is about PKU but I'm getting there I promise. Then there's the question. Will my kids have PKU? It is genetic after all. It really depends on my husband's DNA I guess. If he doesn't have PKU and isn't a carrier the stats say all my kids will be carriers but none will have PKU themselves. If he IS a carrier then they say there's a 50% chance they'll have PKU, & a 50% chance they'll just be carriers. If he has PKU then... let's just say it'll be hard to get insurance to help us pay the medical bills. If they have PKU what trials will they go through. Will kids make fun of them? (I never was made fun of but who knows what may happen?) Will they feel left out? Or will they realize how special they are and how PKU is a lifestyle that makes them unique. Will they stay on their diet? What will tempt them to stray? I want to have a family someday. I have so many great ideas I've thought of and collected over the years. Things to do, how to teach them certain things, and things like that. I imagine having little kids who won't finish their food will be a temptation to me. Maybe I should include a dog in my daydreams (?) to eat the scraps. Anyways... kids. In a dark, silent house when you peek in their rooms. Their faces display peace, innocence, and they look like angels. That is until they're awake... when the real fun begins. ;)

Friday, March 25, 2011

A Letter of Hope


For my Health Class we had to do some act of service to the Health community (it was last year). I chose to help the PKU community. I did an assortment of things: collect coupons, make phone calls, lot of diferent things. But my favorite was probably writing this one letter to new parents of a PKU kid. I still have it. It's part of the new gift packages they are giving to new parents of a PKU'er. When parents first hear the word Phenylketonuria it's like the world is falling down on them. I know. But this letter was meant to give them hope. To show them someone with PKU can have a typical life full of adventure and fun. They can function and live. Funny thing... this blog was made to show the world the very same thing. Guess it impacted me more than I knew. Anyways I wanted to post this letter because it's very special to me. It's my contribution to PKU. I like to think it helps people, and that people are actually reading it this moment. Here it is:

Dear new parents,

Phenylketonuria, a genetic disorder in which the diagnosed does not process the “essential” amino acids called phenylalanine. It happens to one baby in 10,000. It’s rare enough that you rarely have another person with it in your school. How do I know all of this if it’s so rare? I was diagnosed with “classic PKU” 2 weeks after my birth. Classic PKU is when the enzyme that’s supposed to break down the phenylalanine is nearly too completely deficient. I am lucky though; my sister was diagnosed with classic PKU as well, I am healthier than other high school students, and I have supporting parents who guide through life. As you have just found out your child has PKU, I just want you to know two things: your child can have a healthy, normal, happy life; and that your support is needed.

Every morning I wake up early for swimming workouts- I’m on my school’s swim team- I work hard and by the time work outs are over I’m starving. So I quickly get dressed into school clothes and hurry to the cafeteria. I eat the breakfast I brought from home (Working out on an empty stomach burns more calories), usually it’s fruit or a slice of toast made from PKU bread. Once done eating I talk to my friends, who have just arrived, until the school bell rings. Not to brag or anything but I do well at school. I have A’s in all my subjects except math. At lunch I eat the lunch I made myself from home. It’s usually fruit and vegetables. But sometimes it includes a sandwich or some cookies. I have swimming every other day after school but afterwards I start on homework. When it’s dinnertime I’ll whip up something simple like a baked potatoes, some scrambled eggs (PKU version), French fries; all depending on how much PHE I have left.

I weigh everything I eat and try to write it down in a diet record. Once a month they need a blood test from me, so they can examine where I’m at. It I need more PHE or less, whether I need more “milk” or less. It’s all a balancing act. (On the “milk” that’s what I call the medical drink they give me to drink to replace my calcium and other vitamin levels.) Every six months I visit the doctors at Primary Children’s and get a checkup. They work on Mondays so I miss school. Those are some of the bigger differences between me and other kids. It’s not that hard.

I have had sleepovers with friends at their house, played at their house; I’ve had dinner with their families. I just eat what I can have. I bring food to parties if I know I can’t have what their eating, nobody cares. I’m an average American girl. Who loves to swim, write, read, dance, play violin and piano, and who likes horseback riding. I am in -- grade and loving high school. I dislike math and heights. I am a typical teenage girl. With a little loving support, and understanding your new baby can have a wonderful, successful future. Phenylketonuria isn’t a death sentence; it’s a lifestyle.

With Hope,

Cassandra Baggaley

P.S. A lot of who I am today is because my parents who love me, and I want to say thank you to them.



(Remember this was from last year)

Tuesday, March 22, 2011

Food and Dates

Prom weekend was last weekend. I went with a friend and his cousin + his girlfriend. It was a lot of fun. :) Going on dates (especially dinner dates) can be really hard for someone with PKU. You only have so many options. you can either:
1. Bring your own food
2. Eat before
3. Try to see if there's anything you can have and order that /or/ with this case order something specially made.
4. Bring a substitute and see if they'll cook it there

There is good and bad about each of these. You want to make a good impression on a date right?? Some restaurant won't let you bring your own food. Eating before can lead the boy to think you don't eat or your trying to impress him by starving yourself. You might not finding anything you can have on the menu and they won't exclude a couple ingredients. And nowadays most restaurants won't let you cook your substitute. Personally for Prom I did two different things. At lunch on our day date I brought my own food. The boys had each bought food for their dates and I told mine that I could bring my own so he wouldn't have to worry about that. (He was a little disorganized.) Then at dinner we went to Olive Garden. Luckily I found something I could have with little excluding of ingredients. It worked out and I didn't draw any extra attention to myself in the group. I didn't want the whole date to be about my diet, I wanted it to be like a ordinary Prom date that everybody has. (I know that normal is a dishwater setting and that I shouldn't be embarrassed about my diet... but I'm not!) I'm not embarrassed. I just get tired of telling people about it everywhere I go and hog the conversation trying to explain while other people get mad at me for hogging the conversation. Then the best part is when the people who asked about my diet just stop listening and suddenly don't care! They ASKED! It's not like I said, "Hey I have a medical condition and I'm going to tell you ALL about it!" Sorry I'm a little frustrated right now. But basically with dating with PKU; I try not to make a big deal out of it and make it work. Whatever is easiest is the way I try to take. I'll blog in you later. -C.

Tuesday, March 15, 2011

Happy PKU Awareness Month!!!


Yes my friends it is National PKU Awareness Month!!! Time to go out and tell the whole world about Phenylketonuria. Lately I've been noticing that often people who don't really know much about my diet will ask, "Can you have this.?" "Are you allergic to that?" (It's easier to say I'm allergic to something than go into detail about my diet to every person I meet.) Technically there's no can have/ can't have list. It's more of a matter of counting. When a person is on a calorie diet they count how many calories they have consumed and what they have left. Diabetics check their blood before every meal to see how much sugar they are allowed to have at that meal to balance it out. It's the same for Phenylketonurics and phenylalanine. I have to count how much I have eaten and how much I have left. If I have a low PHE (Phenylalanine) day then I can have a higher food like: a doughnut, a cookie, crackers, chips. Every Phenylketonuric has a different limit. It changes all the time too, depending on our blood tests. I personally can have 24 equivalents a day. I have Classical PKU which is the most severe degree of PKU there is. Other people with PKU I've met can have a lot more than that. My sister though can have 18 equivalents a day. I used to be that as well but, because I am on the swim team I need to consume more Phenylalanine than I used to. But I'll get on to exercising and PKU later.

Remember it's National PKU Awareness Month!!! Do something to tell the world about Phenylketonuria! Thanks for reading and good bye.

Your Faithful Blogger, Cassandra Baggaley

Saturday, March 5, 2011

POWER MILK to the rescue!
















So I should tell a little more about me... and PKU. I have PKU myself (if you haven't figured that out by now) and have had it since birth. I am on my high school's swim team, I just tried out for Madrigals and Accapella choirs, and I enjoy reading, writing, stuff like that. I'm not going to tell you too much though because this site isn't about me. It's about my diet and how a teenager with this diet can be happy. How I live with it and how my family lives with it. My sister also has PKU sometime I'll have her write a post but for now it's me.

Now, about the pictures on top... Because PKUers (Phenylkenylnuria in case you forgot) can't eat a lot of meat or dairy we find it hard to get certain nutrients that everybody needs. For example calcium is found in milk, which is a dairy. So we have to drink a formula that gives us these nutrients. There are lots of nicknames for our formula: "power-milk", "milk", "medicine", "formula", etc... I used to call it my POWER MILK! Now, I tend to call mine my formula. I have to have 200 grams of Phenylade Essential and 1 packet Phenylade 60. Both are a vanilla flavored powder that I mix with water in a water bottle. There's more than just vanilla flavored, there's: chocolate, orange cream, and unflavored. That's just 1 brand too! It may seem a bit odd but there are actually quite a few brands of formula out there. So the picture on the left is my formula containers.

The picture on the right is not formula. It's a smoothie I made; I took the ACT test on Tuesday. Everyone knows to have a good breakfast on the day of the test. Teachers tell you to eat protein; but what are PKUers supposed to eat if we can't eat protein, and we still want a good breakfast for the test? I made smoothies. :) It was a great breakfast that lasted me the whole test. I threw some oranges, banana, dairy free creamer (substitute for milk), and shredded coconut into my dad's amazing blender. Then alternated the dial between smoothie, and milkshake. Then last second I threw my formula powder in. It blended just fine and I couldn't taste it (which always is my biggest worry when I use it to cook).

Oh and before I go I wanted to tell you the third most heard reaction to my diet, "I couldn't do it I LOVE meat!!!"

Signing off.

Your amazingly awesome writer Cassandra. ;)