Wheat Starch

Low Protein food is not cheap!!  My very best find was the 50lb wheat starch bags at Honeyville Grain in Salt Lake City.  It is near the airport, about 45 miles away for me, not too bad.  I go about once a year.  Last time I bought 150lbs.  Not sure how long it will last.  I hate working with wheat starch.  It is very messy, so the last thing I want to do is work with a 50lb bag.  So, I deal with the mess in one day.  I used to can it in gallon sized cans, but now I use the mylar storage bags.  We have the LDS Lindon Cannery nearby.  I buy the wheat starch, then I rent a sealer from the cannery for 24 hours, bring it home, and fill the bags in my garage.  It is also a good workout for my kids to carry the bags down to the basement :).  It feels so wonderful to have bins full of packaged wheat starch!  Then I can have a workable sized container in my kitchen, and when it runs out I just grab a new mylar bag from the basement and dump the wheat starch in the kitchen container.

My bins of wheat starch filled mylar bags.

LaBread :)

I have tried many bread recipes in my days.  For several years I used the "Pizza Dough" recipe that I just posted.  I used that for bread, rolls, breadsticks, pizza, etc.  I still use it, just not as much.  We tried a new recipe about a year ago and my kids absolutely love it!  The problem with the new recipe is that it is higher in Phe.  So, I decided to mix the new recipe with the "Pizza Dough" recipe.  Voila!  It was perfect, lower in phe and delicious.
For the delicious bread recipe, and MANY other delicious recipes, go to www.cookforlove.org.  There are some amazing recipes on this website!  Many of them I will make and show you on this blog.  Yum!

LaBread
(haha, we are the LaComb's, so I named it LaBread. Yeah, my 17 year old just rolled her eyes.)
This is a recipe for one loaf.  I usually double it and make 2 loaves at a time.  It is great to slice it up, put it in a large Ziplock freezer bag, and freeze.

Starter:  put these ingredients together first and let them sit on the counter for about 20 minutes, until it bubbles up a little bit.
-15 gm flour (regular flour)
-8 gm yeast
-60 gm warm water

Dry ingredients:  I love to use the Bosch mixer
-405 gm wheat starch
-50 gm Metamucil-plain
-80 gm tapioca starch
-7 gm xanthum gum
-10 gm potato flakes
-12 gm salt
-1 TB sugar
-1/2 TB baking powder
I like to use a whisk and just whisk these together to break up any lumps

Liquid ingredients:  Mix in a separate dish so you can microwave them to warm them up a little bit
-295 gm Rice Milk (I have also used Mocha Mix, or other non-dairy creamers)
-125 gm water
-3 TB butter
-54 gm honey
Warm these up to a temperature like that of a baby's bath.

Mix the dry ingredients, liquid ingredients, and starter together in the mixer just till they are mixed.   Cover the bowl with saran wrap and let the dough sit for about 10 minutes.  Then, turn the mixer on and give it a good mix and knead.  I often add more wheat starch as I mix so that it can be handled without being too sticky.  Shape it into whatever you want to make, bread, rolls, breadsticks, etc.  Let it rise and then bake in the oven at 350 degrees.  For bread, it takes between 30 and 40 minutes.  I like to put butter on the bread when I take it out of the oven.  It makes it nice and shiny and pretty.

I love my Bosch mixer!!!  It is as old as me!  This is the same one I would sit next to on the counter while my mom made bread.  I love this mixer, but I have a wish list with a new Bosch mixer on it!  Someday.

Yummy rolls....take Sam's word for it!

Pizza

Pizza Dough Recipe  (Also great for bread, rolls, etc, AND is good on the budget as it requires only wheat starch as the baking mix).
*Also, this is a nice small recipe for one pizza.  When I am making 2 loaves of bread, I triple the recipe.

Mix all dry ingredients together, even the yeast.  I like this recipe because there is no starter, so no waiting for the yeast to bubble up.
-1 1/2 tsp active dry yeast
-350 gm wheat starch (3 cups plus 2 TB)
-53 gm Metamucil-plain (1/3 cup)
-1 TB baking powder
-1 tsp salt
-2 TB sugar

Then mix the liquid ingredients together and heat them to about 110 degrees by microwaving them.
1 1/4 cups water
1/2 cup non-dairy creamer
2 TB oil

Then mix the dry and liquid ingredients together.  It will be a little runny at first, just wait a few minutes and it will thicken up.  Mix and knead it well, just add a little wheat starch to your hands and countertop if needed.  Shape it into whatever you want to use it for.  For pizza, I usually bake it at 400 degrees for 12-15 minutes.  for bread, I let it rise in the pan and then bake it at 350 degrees for about 30 minutes.

This is a single recipe of the Pizza Dough

I use 2 cups of Prego or Ragu.  Just use what sauce you like and figure out the Phe.

"What is that meat on the pizza?!" you say!!

It is a lovely meat mix from PKU Perspectives.

They have hamburger mix, chicken pattie mix, sausage mix, taco mix.

My kids love it and it has added so many new ideas for meals!!!

Hallelujah!

Thank you PKU Perspectives!

www.pkuperspectives.com

Just add water and oil!!

(I add only water and it works great!)

First Things First---Formula

I have weighed a lot of formula in the last 17 years!!  I have found it the easiest to pre-weigh a week at a time, each day in it's own container.  This way, every night I can grab the container, add water, and shake.  And even better, the kids can add the water and shake!

All ready to weigh.

It fits perfectly in this little cupboard.

Cute!

The Whole Truth

I always wanted to be a mother.  I cried as a teenager while visiting my friend's newborn niece in the hospital.  It was always my biggest desire.  In 1995 it came true.  She was born, healthy, 10 toes, 10 fingers, she was perfect.  When she was a week old I received a phone call to come in for her second PKU test, the first one had been a little high.  It was the next day when we heard the test results.  They told me on the phone that my 8 day old baby had PKU.  What IS PKU?  Panic.  Fear.  I called my parents and asked them to accompany me, Tim, and newborn Alyssa to the hospital for our meeting with all of the professionals.  It was the day of the OJ Simpson verdict.  I remember watching it on TV. Not guilty.  Then we got in the car to go to the meeting.  As I look back, I realize how little they told us.  They knew.  They knew not to give us too much information, that we could only soak in a little at a time.  That is my advice to any new mother of PKU.  Don't jump ahead, take it one step at time, one ounce at a time.  And, more than anything, enjoy every step, every ounce.  They are just like any other baby, sweet, soft, hungry, poopie, and NORMAL.  Joy.  Love.  Faith.

3 1/2 years later, expecting our second child.  A boy.  He won't have PKU right?  It's only a 25% chance.  He was born, healthy, 10 toes, 10 fingers, he was perfect.  As I packed up to leave the hospital and bring my sweet boy home, there was the call.  Our doctor wanted us to come in and meet with her. "Just tell us," my husband said.  "Shit," I said.  I took him home and opened a fresh can of Phenex.  As I fed him from his bottle, I put my face close to his, it was the same smell, the same formula.  This time, it was pure sadness.  No parent wants their child to have to live with difficult things, now both of mine had to.

6 1/2 years later, expecting our third child.  We weren't planning on a third child until our second one left me and went to kindergarten!!  Two children were not enough, PKU or not.  We would have one more.  She was born, healthy, 10 toes, 10 fingers, she was perfect.  I was on a cloud!!  I would experience all of the "normal" things of nursing and feeding!  She was meant to be, perfect!  Then, the phone call.  I was at home.  I felt like I had been swinging high in the trees when someone came along and cut the ropes.  I fell....hard.  Anger.  Bitterness.  Why me?  Why her?  Why?  I told my kids.  "Yes!!,"  they said, "Now she can't stuff her face like our cousins do!"  They were happy.  I was not.  I fought back tears, I couldn't have them see me cry, but I couldn't keep it together.  I couldn't talk to anyone.  It was three days of sadness, three days of anger, three days of feeling bad for myself, until I woke up on the fourth day and I was fine!  Life was good.  I put my face close to hers as I took in the smell of her formula.  Heaven!  That's what my babies smell like!  Beautiful, life saving, lovely, delicious, creamy formula.  That is how my experience of being a mother is and I accept it.  Healthy, 10 toes, 10 fingers....PERFECT!

PERFECT!!

Grandma's and Grandpa's Tender Feelings

I remember the ride home from our visit at the hospital with all of the professionals.  I sat in the back seat with Aly and my mom, Aly sitting between us in her carseat, facing back so that mom and I both had a very good view of her.  I remember my mom fighting back tears.  It was shortly after this ride home when she wrote this poem.

Grandmother’s Thoughts   By Veloy Smith

A nurse pokes a tiny heel

and squeezes drops of blood

to fill the circles on the test paper.

The mother’s already tender emotions

are also pricked as she hears her

fragile baby’s cry.
One in ten thousand they tell her—very rare.

The term PKU is familiar to mothers

throughout the developed world.

They endure the routine test—wishing it was

their own foot bleeding instead of their tiny infant’s.

And so they remind themselves this is just a procedure.

One of the stresses that protrudes into the

special time of birth and newborn bonding.

But this week, this ordinary occurrence

suddenly turned our world into unreality.

Granddaughter Alyssa, was the one in ten thousand.

Thoughts were spinning, it wasn’t true.

She’s so perfect now but will she remain so?

My heart ached for the turmoil of a daughter and son-in-law.

Anger, fear, denial, and hurt were all mixed together.

They searched for understanding.

Those knowledgeable were waiting for them—

to teach, support and console.

The couple bond even closer

as they realize they are both carriers.

Through love this child began

and through love they will sustain her.

Knowledge replaces fear.

Support gives strength for what lies ahead.

Prayer brings peace.

Thanks to humanitarian researchers,

a protein formula will sustain Alyssa throughout her life

giving her the gift of normal physical and mental health—

It is truly her manna from heaven.

Had she been born in a different time or a different place

This blessing would not be there for her.

A simple test has changed her life.

Modern miracles are often taken for granted.

But I will always be thankful for

ten thousand tiny drops of blood.

My dad also had his own feelings to write about.  At the time, he wrote a weekly column in the state newspaper titled "Meanderings."  In these columns, he could choose any subject or thought that he wanted to write about.  As an artist, he would also have a drawing to go along with the column.  It was when Aly was a couple weeks old that my dad wrote this column.  I remember this night very clearly.  When Aly was 8 days old I was told to stop nursing her, that I needed to pump my breast milk so that we could more easily keep track of the amount of breast milk that she drank, along with her new formula.  (Nursing a baby with PKU has evolved through the years as the experience was different with each of my babies)   I had been pumping my milk for about 2 weeks when I developed mastitis.  In retrospect, I realize how stressful all of this was.  It was then that I decided to quit giving her breast milk and continue with the metabolic formula mixed with the prescribed amount of regular formula.  This was my first night without nursing or pumping.  I spent it at my mom and dad's house, not sure why, but I did.  It was a tough night, but a sweet night, a great moment for grandpa to bond with his new little Alyssa.

Here is his column:

Alyssa's Gold -- a 1-in-10,000 Treasure

By Dennis Smith

    "And he . . . Gave the loaves to his disciples, and the disciples to the multitude. And they did all eat, and were filled." --Matthew 14:19-20

Monday, Oct. 16, 1 a.m.: I had just finished watching Ted Koppel on "Nightline" and gone to bed. But while brushing my teeth, I heard a little bell dinging on the microwave out in the kitchen.

That would be Rachel getting up to warm a bottle for the baby. She had driven down in the evening and had decided to stay over. Earlier, I poked my head into the living room and saw that she had settled on the couch. I could also hear Alyssa breathing in the corner in the foldaway crib that Veloy bought last year for the grandkids.

It had been a tough go for Tim and Rachel this past few weeks. A few days after Alyssa was born, they learned that her PKU test had come back high and that she needed to be checked again. This is the test where they prick babies' heels for blood before they come home from the hospital. Every mother is familiar with the test because it pains them so much to see their baby's foot poked.

Alyssa's second test showed that her phenylalanine levels had tripled, confirming that she was the one of every 10,000 to 15,000 babies born who are diagnosed with PKU. So far, she is only the second PKU baby born this year in the state of Utah.

We were pretty somber the morning we went with Tim and Rachel to the state medical examiner's offices to be briefed about Alyssa's condition. A whole contingent of experts was there to meet us, including the state specialist responsible for PKU babies, a microbiologist and a nutritionist, as well as Tim and Rachel's regular pediatrician.

In a nutshell, we learned that PKU (short for phenylketonuria) is a condition where the body is not able to properly break down the amino acid phenylalanine, which is present in all foods containing protein. Over time, it rises to dangerous levels. Unless it can be lowered, the high buildup can be particularly damaging to the protective sheathing around the cells in the brain. In the past, PKU typically resulted in serious developmental delays. However, in the early 1930's, a Norwegian biochemist and physician, Dr. Asbjørn Følling, discovered the cause of the disease after a mother of two severely delayed children came to him. He uncovered the biochemical basis for PKU and learned how to monitor it.

It has only been in recent years (since the early1960's), though, that a reliable blood test to diagnose PKU has been available. During these past weeks, we keep thinking of the 10,000 mothers who are willing to have their baby's heels pricked in order to find the one baby like Alyssa who comes along. What seems a small sacrifice for them looms large in our family lately, leaving us grateful to more people than we can ever repay.

If caught early, it is possible for PKU children to live completely normal lives. A protein formula has been developed that has the phenylalanine removed while still providing the other amino acids necessary for proper growth.

There will be some inconveniences for Alyssa throughout her life. She won't be able to eat hamburgers at McDonald's and will have to weigh each french fry. They say, too, that her life-saving formula will be quite boring at times. But at least it is available.

In fact, that's what was warming just now in the microwave.

Looking into the kitchen, I see that Rachel has Alyssa on one arm and is testing her bottle with the other. I ask her if I can feed the baby so she can get some rest. She concedes.

I hold Alyssa in front of me and study her eyes. She turns her head this way and that, then looks me full in the face. I pull her in close and put my nose against her neck. Babies smell so nice when they aren't smelling stinky. For the moment, Alyssa is being nice.

I settle in Veloy's rocking chair in the family room with a bottle and burp cloth. Out through the window the world is asleep except for a dim rim of fluorescence over the trees where Micron's night shift is in full gear.

I hear Alyssa sucking away at her bottle and I look down into her face again. Now she is squirming and pushing the nipple away, so I sit the bottle on the edge of the couch, wipe the white liquid from the edges of her moth, and lift her to my shoulder for a burp.

As I pat her back and listen to her squeak, I study the half empty bottle on the couch.

Alyssa's gold.

Somewhere out there, someone knows how to make this stuff. Someone else knows how to package and preserve it. Someone ships it, and up in the pharmacy at Primary children's Medical Center, someone stores it. There is also someone to teach us how to use it. And then, there are all those mothers who let their baby's heels be pricked. All for the one in 10,000.

The Bible speaks of 5,000 and the miracle of the loaves and the fishes.

But here, at 1 a.m., in the dim light case from a single bulb above the kitchen sink, a modern miracle spills over unexpectedly into my life, a miracle fashioned from the vision and labors of hundreds of people I will never know but for whom I will always be grateful.