March 31

One year ago today.

March 31, 2009...on this day I had a doctor's appointment with Dr. Wing...we discussed all kinds of things, mostly involving why my body was acting weird since I had gone off birth control. I had been to several appointments with a different doctor discussing the issues, however Shane and I were feeling 'pushed' into fertility treatments that we really had no interest in. I had decided to switch doctors, so I could find out what was wrong with my body without the pressure of fertility treatments.

From the moment Shane and I were married we had always discussed how we both had a heart for adoption. So we immediately knew that if we struggled at all with having our own children we would look to adoption. Well...early in March 2009 we began researching and attended some meetings regarding adoption. My heart wasn't ready to forget about the idea of being pregnant with a child of our own, but with a lot of frustrations of not getting pregnant, I was ready to look onward to the next thing.

Well, God had a different plan for us...adoption would have to wait. Because as I sat in Dr. Wing's office that day, we discussed our plan to get my body straightened out. In the middle of our discussion her nurse walks in, hands me a pregnancy test and tells me I'm pregnant! I nearly fell off my chair! The first appointment Shane decided not to come with me and they tell me that we're pregnant!

Thank goodness I was meeting Shane at a lunch meeting right after that. My doctor's appointment ended up taking a little longer than expected and I was running late. I was also supposed to be picking Shane up from work and we were going to ride together to the meeting. Well, Shane had called my phone nearly dozen times while I was at the doctor. I finally call him back, and he is very worried about what I had found out. I really did not want to tell him the news over the phone, so I cut him off and told him I was on my way to his office.

I drove like a maniac to get to his office ASAP...Shane hops in the car and is a little irritated with me for cutting him off on the phone. I could tell he was worried because I hadn't given him any of the details of my appointment. I looked at him and said we better get to the meeting, but before we do I need to show you something Dr. Wing gave me...I pulled out the pregnancy test and handed it to him (yes, I realize this is a little gross but I did not have a lot of time to practice how I was going to make the big announcement...And besides, the nurse handed it to me like I should keep it, so I did!).

After handing him the test, he looks at me and says "what is this?" He honestly didn't know it was a pregnancy test! To his defense they look different at the doctor's office than most of the home tests. I pretty much scream something to the tune of..."Honey, I'm pregnant!" I don't really remember what our short conversation was right then, we were both in shock after being told by our first doctor that he didn't think it would be possible for me to get pregnant without the help of fertility meds. What I do remember is sitting through that boring lunch meeting just looking at each other and smiling!

No one but God could have imagined all that we would go through to get to where we are today. Shane survived a crazy and hormonal pregnant wife. I've survived the pains of pregnancy and labor. And we've survived the last three and a half months of being new parents. Not only have we survived, we've thrived! We've learned that being a parent is one of the most joyful things in this world...and it is also one of the hardest. Everyday Isaiah teaches us more. He definitely inspires us to want to do better and to make this world a better place...for him. We would do anything for our little boy. I still look at Shane while he is holding Isaiah and simply just smile.

PKU and Insurance

Below is an interesting article on issues very dear to our heart these days. I pray that there is some changes in our insurance coverage before Isaiah is older and needing potentially up to $1600 worth of formula a month! There are 38 states that require coverage of PKU formula, Iowa of course is not one of them. I hope this changes some day. This article gives me hope that it might even change on a national level. I foresee Shane and I becoming very involved in writing letters and meeting with some local senators and representatives on this issue. Please continue to pray that we can provide Isaiah with everything he needs and that United Healthcare can be fair.

Published: December 04, 2009

Health Leadership from Sen. Kerry and Sen. Casey: A Cure for Devastating Discrimination in Insurance Coverage for PKU Patients is on the Move

WASHINGTON, Dec. 4 /PRNewswire-USNewswire/ -- The following is an op-ed by Jeffrey Lewis, President of the Heinz Family Philanthropies:

Credit Senators John Kerry (D-MA) and Robert Casey (D-PA) with a significant contribution to the health care debate: a bill ends a glaring disparity in the way Americans living with Phenylketonuria (PKU) control their potentially devastating disease, and the way others living with serious chronic conditions are treated. "The Medical Foods Equity Act of 2009" aims to save affected families thousands of dollars in out-of-pocket costs, cut long-term costs for the entire system, and offer 20,000 Americans a better shot at healthy, happy, and productive lives.
What is PKU? PKU inhibits the body's ability to process protein, leading to severe brain damage. PKU appears in between 1 in 13,500 and 1 in 19,000 live births in the U.S. If the condition is not identified and controlled, its victims suffer grave neurological damage, losing an estimated two-to-four points of IQ per year, and running the risk of seizures, microcephaly, mood disorders and profound retardation. If diagnosed, these conditions can be prevented by a diet of the specially formulated foods which prevent toxic accumulations, and PKU kids can go on to lead nearly normal lives. Many adults can and do function with PKU as long as they can have an uninterrupted supply of the formulas.

But there's a problem. Medications that control chronic conditions are generally covered by insurance. But because PKU is treated by diet, not by a pill, many families and individuals are forced to pay thousands of dollars a year out of their own pockets to avoid what otherwise would surely be a slow death in an institution. The distinction between diets and medication for treatments is arbitrary, widespread and wrong.

We've come part of the way towards equitable treatments. Almost 50 years ago, newborn screening programs were developed, and now all infants in the United States are tested for so called "errors of metabolism." Early detection and consistent treatment will prevent the neurologic damage done by PKU. Nationwide, spending about $340 million a year on PKU diagnosis and maintenance could save almost $2 billion a year while assisting 20 thousand families hit hard by a traumatic disease. It's good economics and a good reflection of the moral thinking that should be at the heart of our health care debate.

Unfortunately, the Newborn Screening Saves Lives Act passed by Congress last year does not mandate or fund treatment of PKU or other similar disorders, leaving it up to the individual insurance plans to decide whether to treat these children.

38 states require that health insurance plans or other state programs cover PKU treatment. But even in the states requiring PKU coverage, there are huge gaps. For example, health care plans regulated by the federal Employee Retirement Income Security Act (ERISA) - self-insurance plans by large employers or unions -- are exempt from state requirements to cover PKU treatment. 134 million Americans are covered by ERISA-regulated health plans. And, of course, if you lose your insurance or you're forced to change plans for any reason, you may be out of luck, as well.

Jennifer Ruland, of Binghamton, New York, found out about the ERISA loophole the hard way. When she became pregnant last year, she elected to take the most expensive and comprehensive HMO her company offered. "I never thought for one minute that something like PKU would not be covered," she says. But when McKenna, now five months old, was diagnosed, Jennifer discovered that her company is self-insured, and that the hundreds of dollars a month she spends on the special formula her daughter needs to thrive are not reimbursable because the foods are "over-the-counter." Adds Jennifer, "I think the health care industry just needs to realize that PKU is serious and the diet is not optional," if PKU children are going to grow up to live normal lives.

Steve Droogan, of Pennsylvania, lost his insurance through his parents' plan once he graduated from college. A COBRA cost him $400 a month and did not cover his $1600 per month cost of PKU coolers, which provide 80% of his nutrition. Steve managed to barely get by on free samples, help from non-profits, and out-of-pocket support from his parents. Steve finally landed a job with insurance that covers his PKU coolers, but will likely face battles for coverage of his pre-existing condition, should his company change insurers, self insure, or he try to take another job.

Senators Kerry and Casey's foresight in introducing this bill may not be rewarded with a place on a jammed Senate agenda. But this should be the beginning of the process, not the end. Action at the state level could be just as important. As the legislative season approaches, every governor, and every candidate for the governor's office should demand that every health insurance plan offered in their states include coverage for PKU. By taking that one step, a governor can ensure that thousands of PKU families are treated fairly and equally -- all that PKU families ask. Sometimes, creating health care solutions is just common sense. Now is the time to act - it's the frugal thing to do. And the right one.

Jeffrey Lewis is the President of the Heinz Family Philanthropies and can be found at jlewis@heinzoffice.org or 703-403-9695.
SOURCE Heinz Family Philanthropies

puppies in need of love...

These two pups have been amazing since our little Isaiah was born. Surprisingly enough they've adjusted well to the lack of love they've received lately! Bailey FINALLY got a haircut after going months as a shaggy neglected dog! Won't be long before Isaiah is big enough to give them all the love they need...probably plus a little more!

frustrated...

Today I am frustrated...

I don't get into many political issues like the healthcare bill that just passed...I'm generally just a stand on the sidelines type of girl when it comes to that stuff. However, today I'm frustrated with our healthcare system and insurance companies.

Since Isaiah was 4 days old and we found out about his PKU, the University of Iowa Hospitals has been working with our insurance company to hopefully get some sort of coverage for Isaiah's very expensive Periflex formula. And when I say expensive, I mean like $80 for a small can of formula! Well today we got this email from U of I Hospitals...

Hello-

Right before I left tonight, I got a call from UHC on Isaiah Austerman. They will not be covering his formula even though he has PKU. It almost sounded like UHC is going to start following the same stance as UHCRV & not cover formula at all, unless it is written into the contract. The family is going to be receiving a letter in the mail explaining this as well as information on how to proceed w/the appeal process. Can one of you please contact Shane,as I can't get his email address to populate from home, and let him know this information. I would recommend that he talk to his employer to see if they can assist in either getting a special clause written into their plan that will allow UHC to cover the formula or adding the benefit to their plan if the insurance plan is a self funded plan. Also, tell him that if he needs any information from Judy to go w/the appeal (ie: letter, etc) to let you guys know.

This is ridiculous if you ask me. We pay for insurance, however our insurance company views Isaiah's formula as a choice, even though if he didn't have it he would become mentally retarded. This is really hard for me to understand, and I'm truly trying to not worry myself to death. Shane is much more in control about the issue, it's a blessing to be married to him in times like these...he handles everything with such a calm & cool attitude and just looks to the next step.

So we are in the process of writing an appeal to our insurance company. I'm not sure if there is any hope or not, but we are trying to remember that God is in control of all things. No matter what we've been through he has always provided.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11

26 years and 3 months

Today is a BIG day for my boys! My sweet husband is turning 26 today and my little boy is turning 3 months! So today I’m celebrating my guys!

To my husband: Thank you so much for everything you are and stand for. I love you so much, I can’t even put into words what you mean to me……but I will try. :) I have loved just simply knowing you the past 6 years….and falling in love with you has been a bonus that I couldn’t have imagined in my wildest dreams! It’s so amazing to be married to my best friend, walking through life with you, waking up next to you, learning to roll with the punches with you, and just laughing everyday with you. I enjoy our deep conversations as well as the simplicity of the days we can just sit in silence. I’ve never imagined that married life could be so much fun, but you definitely make my life exciting and interesting. :) I love how you purposefully do things, just so that I will laugh (I could give examples, but I won’t embarrass you on your birthday). I absolutely adore how you treat Isaiah and I, you care for us so much and we are so fortunate to have a husband and father that thinks of us first in every decision he makes. Thank you for pushing me in the things that you know I can do better; for understanding when I need a break; for giving me a shoulder when I need to cry; for inspiring me when I need motivation; for providing a positive attitude when I’m down; for having a strong faith when we go through life’s “bumps”; for telling me I’m beautiful when I’m in sweatpants; for standing up for what’s right when no one else will; for teaching me all things technology and Google related; for never letting me cry alone and always cheering me up; for never letting me just “drop” a fight; for indulging in sweets with me so I don’t feel so guilty; for helping me learn that sometimes having a clean house really doesn’t matter, the people inside do; for always giving me your time; for praying with me; for being a parent with me; for being my very amazing, loving, handsome husband! I couldn’t imagine life without you. I pray that you have a wonderful birthday and your 26^th year of life is the best yet. I love you!

To my son: Isaiah, you mean the world to me. Even though you can’t read this, I hope someday you will and you will know how much you mean to me and how much you are loved. I’ve never experienced a love like this. Every single day I want to do everything in my power to make sure your life is everything it can and should be. Your smile absolutely brings joy to my life. If you are happy, I am happy. No matter what goes on in my day, I rush out of work hoping that I’ve beat daddy so that I can pick you up from daycare…I can’t wait to see you! You’ve changed my life in ways that I hadn't a clue were possible. I no longer need sleep, food, or exercise the way I used to. All of that can wait, if it means that I can do something for you. It’s such a blessing to be your mommy. I’m still learning and figuring things out, but I’m loving every second of it! It’s so much fun to play with you, to rock you to sleep at night, to give you your bottle, and even to change your diapers! :) I hope that we always have this much fun together and I hope you know how much your dad and I love you. I pray that you will continue to grow and learn and be everything God has planned for you. I love you!

3 Months Old!

Our week!

Just a few pictures from this past week! We love our little boy!

Just being my cute self!

This last week daddy had to travel for work. So Isaiah and mommy got to hang out together for most of the week. We survived, but our poor little guy was sick most of the week too, which meant very little sleep for mom! I don't especially like this picture of me, but Isaiah looks so funny, I just had to post it!

I was getting ready to change Isaiah one morning, and he was SOOO HAPPY! He just kept stretching and smiling...I just had to take a picture!

Once again - no story, just a cute little boy that is growing up before our eyes! :)

This weekend, I did a little baking and everyone was in the kitchen helping me!

These days Isaiah is a REALLY happy little boy. He can turn on the smiles and melt your heart...well at least mine!

Just hanging out waiting to go to church this morning. This is our second outfit of the morning...Isaiah decided to spit up most of his bottle on his first outfit. And this is the second Sunday in a row that this has happened...didn't stop us from going this Sunday though!

Today was warm enough to go for our first walk outside! Yea!! We went over to Cedar Falls to walk with my friend Bailey - the first of many walks with Isaiah in the stroller!!!

Done...

Breastfeeding that is. I really mean ALMOST done breastfeeding. It’s been a long three months. And to be completely honest, I wish it weren’t ending. The past few days I’ve really felt defeated. I honestly can’t believe how much I want to breastfeed and how guilty it makes me feel for throwing in the towel.

But, the truth of the matter is, our little Isaiah now weighs over 14 lbs. And I just can’t keep up with his eating habits, even with him taking some of his special formula! Since I’ve gone back to work, I just don’t seem to be producing enough for our little guy. I do feel like I’ve given breastfeeding my best shot, but it still makes me sad to know that I’m done with this part of being a mommy.

I guess, there comes a time when you can’t make any more lactation cookies (although they are tasty!), drink anymore special teas, or take anymore pills to try to increase your milk. It might be different if I was with my baby all day and could actually nurse him, or if we didn't have to give him a bottle for his Periflex formula or his thyroid medicine. But sometimes we just have to deal with what we are given and just be ok with it. Even if I’m not completely sold on the idea, I know that I cannot stress myself out by trying to do it all...and my husband keeps reminding me of this! I made it to 3 months, and I guess it's not as good as what other mommies can do, but it's just going to have to be ok for us...

A fun weekend...

We had a busy weekend!!

We went to Delhi to visit Grandma and Grandpa Willey!

Grandma Judy came to see us!

And Uncle Chris, Aunt Andrea, and cousins Izzy and Wyatt stopped by to see us too!