Starting Over

So it has been a few years but I am pretending I am going to blog again.  Lets see if I can make it past the 3 or 4 posts of last time.

An update on life… one kiddo is now living at mom’s and we added a baby.  We also have moved to Washington.  Life is still as busy and crazy as ever.

I am hoping to review some stuff, post some stuff on PKU and school struggles and just keep everyone updated on stuff.wetherby-summer-07

Me

Guess it’s time to talk a little about me…

I was born in Lincoln, Nebraska on August 6.  I grew up an only child.  We lived in Lincoln until I was 9.  I only have vague memories of living in Lincoln.  I remember going to some Cornhusker football and basketball games.  I remember going to the zoo.  I remember a couple museums.

When I was 9 we moved to a suburb of Kansas City.  Our house was kinda in the country, kinda in the city.  There were cows behind my house and my school was in the middle of nowhere.  However, I was definitely a city girl.

In Kansas City we did all of the regular things… Royals and Chiefs games, Worlds of Fun, the Plaza.  These are all part of my memories.  It was a happy childhood.

When it came time for college I think everyone thought I’d go to Nebraska like all of my family had.  I did not.  I went to the University of Kansas and was a Jayhawk.  I had plenty of fun in College.  I double majored in Applied Behavior Science and Psychology.

For a year after college I stayed in Lawrence and worked.  Then I moved to lovely Colorado Springs.  I’m not sure anyone believed I would make it in Colorado but I’ve made it.

In 2011 I met Travis on a date from Match.com.  We got married in 2012 and here I am.  I’m sure there will be more posts on all of this in the future but thats it for now..

.Photo 108me and my cousins…

What is PKU

According to wikipedia…PKU (Phenylketonuria)  is an autosomal recessive metabolic genetic disordercharacterized by a mutation in the gene for the hepatic enzyme phenylalanine hydroxylase(PAH), rendering it nonfunctional.[1]:541 This enzyme is necessary to metabolize the amino acid phenylalanine (Phe) to the amino acid tyrosine. When PAH activity is reduced, phenylalanine accumulates and is converted into phenylpyruvate (also known as phenylketone), which can be detected in the urine.[2]

 

Sounds fancy but what does it really mean?  It means if Tevin has too much protein it will build up in his blood and fry his brain.  However, he also has to have a certain amount in order to maintain proper growth and development.  Protein is in nearly every food.

Tevin’s current limit of phenylalanine is 350 mg per day.  This is approximately equal to 7 grams of protein.  Protein is listed on the back of all foods.  Peanut butter has 7 grams of protein in 2 tablespoons.  If Tevin was allowed to eat regular food he could have 2 T of peanut butter per day and that would be it for the entire day.

Currently all food or drink that goes into Tevin’s mouth is measured.  In order to determine how much protein he is getting we measure everything he eats or drink in grams.  There is a book that has the phenylalanine for nearly all foods.  It has different brands of each and every major food.  Different brands of the same product may have different amounts.  We record all of Tevin’s food for the day.  We have pages and pages of Tevin’s food.

Most of Tevin’s food is special ordered.  There are a couple of sites online where we can order from.  Cambrooke foods has a lot of frozen foods that are really convenient.  However, they are pricey and must be stored in the freezer.  PKU perspectives has a large selection of shelf stable foods but they usually involve a little more prep.  Below is Tevin’s current food supply.  We are a little lower than normal as he has been at his mother’s for part of the summer.

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There are also many recipe books and sites.  My favorite is http://www.cookforlove.org/ .  A chef started this site after her daughter was diagnosed.  She strives to use supplies that are easy to find and are more reasonably priced.  However, the recipes often involve many steps and can take all day to make.

We strive to make Tevin’s meals as similar to his siblings as possible.  I have learned to shape his foods into things similar to our meals.  We have also pushed Tevin hard to eat new and different things.  Its been a struggle.

In order to supplement tyrosine Tevin must drink formula.  We are very lucky that our insurance covers this formula.  I believe it costs over $1000 a month.

The other major part of PKU is measuring the phenylalanine in Tevin’s blood.  This means getting a blood test done every 2 weeks to once a month.  We have the materials to do this at home.  However, by the time we ship it it is sometimes no longer good and we have to redo it.  For awhile we were going to the hospital to get it done.  When they had to get blood from Tevin’s arm he would scream.  The last time we did it that way he cried the entire way home.  We are so thankful that Children’s Hospital of Colorado has opened an outpatient lab in the Springs because they will do a finger prick.  It really makes our lives so much easier.

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PKU is hard.  It makes almost any meal related activity difficult.  We have to preplan for everything.  We have found a lot of support thru different facebook groups.  It is nice to have others with similar lives.  And its nice to have others to answer questions we may have.

The kids

So our oldest is the girlie, she will be 9 in a month.  Girlie does super in school.  She is in the gifted and talented program.  We are very proud of her.  She is also on the competitive jazz dance team and a member of the ballet company at the studio she dances at.  Girlie loves American Girl dolls and attends the “club” once a month at Barnes and Noble.  She also just bridged to become a Junior Girl Scout.

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Next is the defiant one.  He is 5 and on his way to kindergarten this year.  We are interested to see how he does as he seems to enjoy disagreeing with adults.  This year he started dance like his sister.  He took hiphop class on base.  It took him a couple months to get into it but once he did he was actually pretty good at it.  We all giggled a little when during his recital he ran to the front of the stage to get his shoe tied.

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The blond one will be 7 in 2 days.  He has worked very hard this year in school and made a lot of progress.  He has Asperger’s so things are a little bit more difficult for him.  With the help of a great teacher he is all caught up and ready for first grade.  I think we are all excited for him to have new challenges.

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And last is the baby.  He is 4 years old.  After a year and a half of behavioral services (with a number of delays thanks to insurance) he is really starting to talk.  He loves to chat with anybody and we have to force him to give up the phone when he is talking to his Grandmas.  He currently has an autism diagnosis.  He also has classic PKU.  Because of his PKU, the baby is on a very specialized diet.  He is not allowed any meat and has mostly special ordered food.  I am sure lots of posts will be about this in the future.

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About me

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I am Valerie.  I have been a behavioral therapist for kids with autism for nearly 6 years.  I love my job but changes are coming.  I married Travis in February 2012 and gained an instant family.  Our oldest, the girlie, will be 9 next month.  The blond one is next and will be 7 on Saturday.  Our defiant child is 5 and the baby is 4.  They spend most of the year with us and we are hoping to make it the entire year they are with us.  Between two autism diagnoses, PKU and a competitive dancer we are a very busy family.  This blog will be about our adventures in life as I become a stay at home mom and take on a couple of kids to babysit.

PS…photo credit to Adrian Raszka photography