Path To a Debt Free Life

I've said it so many times before that this is going to be my year.  Maybe I say that it's my year to get the house organized (get rid of clutter). Or my year to lose weight.  I've had a year where I was training for a half marathon. And a lot of other years!

This year is different thought.  This year I'm working on building up our savings and paying down our debt. This is so much bigger than anything that I've tried to do before. By building up our savings and paying down our debt, I'm helping to get rid of some anxiety.

The anxiety that happens every time I get ready to pay our bills.  Every time that I look at the checking account balance and wonder if we have enough to pay the bills. Every time that I have to transfer from our savings to ensure there's enough in checking to cover a bill. 

Have you or do you currently have anxiety when paying your bills?  I do.  And I'm sick of not being in charge of our money.  

THIS is the year that I'm going to be the boss of my money.  I'm going to tell the money where to go.  I'm going to lower my anxiety and fears about money.  THIS is my year.

To help ensure that things are going to go well and to keep me motivated, I created a chart for our savings and our debt.  The charts are set up where I take the amount that I want to save or the total debt and split it into 50 smaller amounts.  Then I can decide if I'm saving weekly or monthly.  I write out the amounts that I'm saving up for and color in each section as I hit my goal.  It may seem simple but there's something really special about seeing my progress as it's made.

Our Honeycomb Class Blog

     Each year I have a class blog where I share what we're up to in my classroom.  This is where parents, family & friends can stay up to date on what we're learning.  They can view our crafts and all of the fun activities that my kiddos are up to.  Feel free to check out my class blog at www.ourhoneycomb.blogspot.com

PKU Essentials

I thought that I'd share a page from out PKU Protein book.  I look at this book on a daily basis.  It is so easy to read and gives me everything I need to know about "regular" and "low protein" food.  The book is divided into sections:  Baby Foods, Fruits& Veggies, Free Foods (this section is AWEsome- it lists a bunch of food that has NO phe in it!), Very High Protein, and several more.  This book is essential to managing PKU.  Without it, PKU is like a guessing game.  You would have no idea just how much phe/protein you were taking it.  It also helps to break down recipes.

     For those of you who follow this blog, but don't really know anyone with PKU, this book might not mean that much.  But I take this book with me to the grocery store, to restaurants, and just about everywhere.  It reminds me just how many McDonald's french fries that Lily can eat and still stay within her daily intake level.  Just in case you're wondering~  a small order of fries(68g) is 88 phe.  You still need to weigh the fries to get an accurate exchange.  So my digital scale goes with us everywhere also!

     When figuring out the phe, I locate the brand in the binder.  Like I said, everything is in tabbed sections, which makes locating the food item pretty easy.  Unfortunately, there are quite a few things that are not in the book.  I have had to call Gerber and ask to speak to a dietition regarding some baby food items.  Gerber is really good about locating the information and calling back with results.  Not all food companies are this helpful.  
     After I find the food item, I look for the category "Mg Phe/Gm Food."  This tells me the information that I really need.  It tells me how much phe is in 1 gram of food.  I then weigh my food and use my handy dandy calculator.  If Lily doesn't eat all that I measured out, then I need to measure what is left over and figure out just how much phe she took in.  This is when my math skills come to play.  I really didn't believe my math teachers when they said someday I really will use algebra!  Boy were they right!
                                     
                                             25 gm of food  =  18gm of food      
                                                  6 phe                       X                 

     I would multiply 18 times 6, then divide by 25 to figure out how much phe was consumed.  Did I tell you how much I love my calculator?

Section	Category	Brand	Food	Measure	Weight (gm)	Phe (gm)	No. of Exch.	Mg Phe/ Gm Food	Pro (gm)	Calories (Kcal)
Baking Ingredients	Flour & Baking Mixes	Namaste	Cookie Mix	1/24 pkg.	23	41	2.73	1.78	0.8	80
Crackers & Snacks	Snacks	Pirate's Booty	Baked Rice & Corn Puffs, Aged White Cheddar	1 oz.	28	120	8.00	4.29	2.0	130
Crackers & Snacks	Snacks	Roberts American	Pirate's Booty, Caramel	1 oz.	28	60	4.00	2.14	1.0	120
Crackers & Snacks	Snacks	Roberts American	Tings	1 oz.	28	118	7.87	4.21	2.0	150
Crackers & Snacks	Snacks	Roberts American	Tubes, Veggie & Original	1 oz.	28	64	4.27	2.29	2.0	130
Crackers & Snacks	Snacks	Roberts American	Veggie Booty	1 oz.	28	66	4.40	2.36	1.0	130
Crackers & Snacks	Snacks	Roberts American	Veggie Booty, Barbecue	1 oz.	28	75	5.00	2.68	2.0	130
Crackers & Snacks	Snacks	Roberts American	Veggie Booty, Spinach & Kale	1 oz.	28	66	4.40	2.36	1.0	130
Crackers & Snacks	Snacks	Roberts American	Veggie Chips	1 oz.	28	66	4.40	2.36	1.0	120
Crackers & Snacks	Snacks	Roberts American	Simply Booty Vegan	1 oz.	28	39	2.60	1.39	0.8	120

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The Economic Side of PKU Part 2

There are not that many people who have PKU in the United States.  Approximately 14,500 people in the United States have PKU. Of that 14,500 people, 5,500 of them were not diagnosed at birth.  Those 5,500 were not started on a proper diet immediately and are now living in dependent group homes or mental institutions!  There's also an unknown number of people who had PKU but it was never diagnosed, because they were born well before the newborn testing.  Most of these undiagnosed people were just labeled "Mentally Retarded".
       Knowing this information helps to put the next part into perspective.  The other day I mentioned that having PKU is expensive for families.  Having to buy low protein food and formula is tough.  But it would be even harder for families and society to have to take care of a person who has not had their PKU treated. 
The following information can be found on the National PKU Alliance website.

      Even though PKU is expensive, it would be even more expensive to take care of PKU patients who did not maintain a low protein diet or drink their formula.  Let's think about my state, Illinois.  In Illinois, the PKU formula is provided to my family for free.  Yes, I know that it's paid somehow, probably through the taxes that you and I pay. (Thank you)  I'm sure right now, you're thinking- great another state run program that's helping some other family but not mine.  But please read on....

The annual cost of medical formula for PKU averages $7,100 per year, per person.  However, the cost of diagnosing and treating the PKU is extremely less expensive that treating someone who was not properly diagnosed.  Here's the break down.


Cost per infant for newborn screening (varies by state)                                            $50
        *Covered by insurance companies
Number of newborn screenings each year                                                             4 million
Annual cost of newborn screening for all                                                            $200 million

Annual cost per  person for medical formula                                                           $7,100
Number of Americans needing formula                                                                   20,000
Annual cost of formula for all Americans with PKU                                             $142 million
     *Not all states pay for the formulas


Annual cost of Nursing Assistant care in residential care center                       $50,000-$100,000
Number potentially requiring care because of non-treatment                                    20,000
Annual cost of managing disable patients treated too late                                       $1-2 billion


     Can you see that even though PKU is expensive, it could be so much more?  Imagine if there was no newborn screening or no insurance or government help.  The ideal annual cost is only $7,100 compared to the non treated cost of $50,000-$100,000.


     When I first saw these numbers, it blew my mind.  I know that I would never not treat my children, but guess what, there are some families that just do, for a variety of reasons.  Plus, there's countries that don't provide newborn screening!  So, now do you understand why newborn screening is essential?  Please use this information to be more aware of PKU and to urge your state to screen for more diseases and disorders.

The Economic Side of PKU

Having PKU is expensive for many reasons.  In order to control the PKU and not develop permanent brain damage, a person with PKU must maintain a low protein diet for life and drink their metabolic formula for life.  Depending on the state that a person lives in, determines just how expensive this is.  Currently, most states don't mandate that insurance companies cover the metabolic foods and formula that PKU people need to survive.  Now if you needed to control your diet for diabetes, insurance companies cover the insulin medicine that you would need.  BUT if you needed to control your diet for PKU, insurance companies would not cover the medicine (medical grade food & formula) that you would need.  Does that seem fair?
  
      Just to put things into perspective, here is a list of typical foods that a PKU person would eat daily and the cost of the food items compared to "regular" food items....

                        PKU Foods/Cost                                              "Regular" Foods/Cost                                  
                  
                    Low Protein Linguine- $10                                           Linguine- $3
                  Low Protein Bread Loaf- $12                                     Loaf of Bread- $4
                Low Protein Pierogoi- $17.50                                    Box of Pierogi- $4
                       Baking Mix- $29                                                       Flour- $3
                Low Protein Brownie Mix- $12                                    Brownie Mix- $3
                   8 Low Protein Bagels- $12                                       Bag of Bagels- $4
       25 pieces of Low Protein Chocolate- $22                  Big bag of mini chocolate bars- $6

     Now there's a lot of "regular" foods that PKU people can eat, but the foods still need to weighed and have the protein/phe levels known- veggies, fruits, coconut milk, coconut yogurts, margarine, certain salad dressings, hard candies, etc.  Some people with PKU have a high phe tolerance and can put in a small amount of white bread and cow's milk into their daily diet.

     Lily has a low phe tolerance of 295 mg per day.  Thomas is currently at 50 mg per day, but he's still a baby and his number is expected to rise.  Since Lily has a low tolerance, we rely heavily on the low protein foods and fruits and vegetables.  Currently our insurance does not cover Lily's food.  However Illinois hospitals have a division for families to provide food at a discounted cost for qualifying families.  Not all states have this.  So imagine if you live in a state where your medical food isn't covered, how do you get by?  It can be really tough.

     Here in Illinois, our medical formula is provided for free.  Each month, I call the state office and order our formula.  It gets shipped from England, to New York and then to us!  I am extremely grateful that I live in a state that provides the formula.  Formula is not covered under insurance and is extremely expensive.  I can't go to a store and just pick something up.  PKU formula is medical grade and provides protein to help my children grow, but it doesn't have phe in it (the type of protein that my kids can't have).  If ordering the formula online, it costs anywhere from $67-$95 per can!  My kids go through 2 cans each week, each kid!  I'd be spending close to $300 each week on their formula.  Plus it's not like baby formula.  They need to drink their formula every day for life, in order to meet all of their dietary needs! 
    
     This is just one perspective of PKU economics.  We also take weekly blood draws and them sent to figure out the phe levels.  Plus our monthly drive to the clinic and cost of the appointment. 

     Please don't read this and think that I wish my kids didn't have PKU.  Honestly, sometimes I think about it and know that it would be easier that way.  But my kids are mine and are perfect just the way they are.  Their genetic disorder is part of them and has given us so much.  I'm beyond feeling the guilty part and hating the diagnosis.  I'm at the point where PKU is just part of our family, expensive or not!  Don't read this and think that I'm wanting your sympathy.  I'm just wanting to educate everyone about PKU, all aspects of it.  I know that having PKU children can be challenging, but there are so many other disorders and diseases out there that are much more difficult.  I'm grateful for the life that I've been given, and know that I'm right where I'm supposed to be!