Sippy Cup Conundrum

This morning Shane and I spent 20 minutes looking for a sippy cup. Not joking! We were both late for work, because of a sippy cup! This is not the first morning a sippy cup has gone missing, but this WAS the first time we weren’t able to located the hidden cup within a couple minutes.

Zay has had a fascination with putting things ‘in’ and ‘under’ and ‘squeezed between’ and ‘thrown into’ for quite some time. Not to mention our little black fur-baby that loves to carry things off and hide them as well. For example, just the other day we were leaving to go to church and Shane spots a black article of clothing in the mound of snow near our backdoor, then asks…”Why is my SOCK outside in our backyard?”. Thank goodness it was only a sock, we could really get the neighbors talking if we had some undies chillin in our snow banks.

So anyway, back to this morning’s sippy cup. Isaiah is sitting in the middle of our living room while mom and dad attempt to turn the room upside-down in order to find his cup. You see, we didn’t know how much of Zay’s “milk” he had actually drank that morning, so we didn’t know the amount of Phe he’d gotten. Hence, the great need to locate the cup. Oh, how I wish I had a video camera of the entire episode. Shane would look at Zay and ask “Zay, where did you put your cup?”. Zay would look up at him, raise his eyebrows and give the most innocent smile. I’m positive I looked under our couch, loveseat and chair 10 times. And Zay would watch me and then imitate me, as if he was giving me some sort of support by helping me look.

If you ask my husband, I can get very annoyed when something is displaced. I’m pretty sure Shane hates my saying “everything in our home, has a home”. However…this morning while I was carrying Zay to the car, I just had to laugh. Isn’t life all about perspective. To one parent a lost sippy cup is a bummer because you know one day you will find it old, smelly and moldy and probably throw it out to avoid dry-heaving after smelling it. To another parent a sippy cup is worth 20 minutes of searching in the morning and being late for work.

In the end, the sippy cup was located…in the corner of our living room. Next to a toy he hardly plays with. Hidden between the leg of our chair and the dog bed. All is well. Zay was incredibly excited to see his cup and finished his “milk” immediately.

And the real kicker of this story? While walking to the car to get Zay loaded, thinking about the comedy of this morning’s sippy cup extravaganza, I spot TWO socks in the snow…luckily, still no undies.

This is what happens...

...at the dinner table...

...when a little boy...

refuses to take a nap at daycare! :) Thankfully this happened awhile ago...and has not happened again since!

Overheard at the Austerman House…

I married a great man...if you don't believe me, read the last 'guest post' by him. So endearing that he would speak so sweet of not only me and Zay, but everyone we come into contact with!

Some of the things he says just resonate with me.

There are moments that I have to stop myself mid-sentence and say “wait…what did you say?”.

I forget to LISTEN…

Thankfully, he repeats the important things.

Lately I’ve been hearing, reading and listening to him say this…

“We put in the effort, and God takes care of the outcomes”

This is probably in direct correlation to his involvement with Love Cedar Valley. But it’s something that could use a little more focus on in my everyday life too. I need to put in the work, sweat and tears…and just let God do what God does – reveal Himself!

“Whatever you do, work at it with all your heart, as working for the Lord, not for men,” (Colossians 3:23).

Guest Post - Shane

I was just thinking, can you be a guest in your own house (family blog?). Anyway, Jackee is usually the one who writes all the posts. Well tonight she is up in our room sick. So I wanted to write a few of my thoughts down.

First, I want to tell a few stories that have gotten me through the last few months. These are stories of people giving from their heart, and helping Jackee, and especially me, in ways they probably don't realize. It starts with so many positive emails and comments to uplift our souls. Then somebody giving us an air purifier in response to reading about Isaiah's breathing problems. Then somebody giving us a shredding attachment for our blender in response to reading about Jackee spending so much time cooking. Next somebody is giving us a food processor to cut down the time even more. Now it is people contacting our Senators so Isaiah can hopefully have an easier time staying on diet and ultimately staying healthy. These acts of kindness mean more to me than an air purifier, shredder, food processor, an letters, they are the manifestations of God's love. These acts don't even begin to explain how the people around us have been supporting us. From the people at work who spend the 30 minutes to hear about our struggles, to our babysitter who takes unbelievable care of Isaiah, to our small group that is there to listen and support us, to our brother and sister in law who watch Isaiah whenever asked, to our parents who are there for anything we ask; we are surrounded by God's Grace. I can't thank you enough for your support.

Next, if you are reading this, you already know what a special kid Isaiah is. Words really don't express how much I love him. He brings me so much joy and happiness. He has been through so much in the few months he has been here. He is so strong. When I get home at night and I see his smile, it gives me such a sense of purpose. In the moments when life gets the hardest, I know why I keep fighting. Since Isaiah was born, we have fought and fought. There have been times when it has been overwhelming, but Isaiah makes it worth it. I know that he is going to grow up and do something amazing. I have faith in God. I know that he will be able to draw on his hardships and struggles to help others.

Last, Jackee has made multiple posts saying how I am a good husband, but I feel like I married the greatest woman in the world. I joke around that I married up, but that really is an understatement. Her grace and courage through our trials have been amazing. She rarely angers, but almost always shows love. She is so humble she consistently undersells her own abilities. She would love to spend more time with Isaiah, but needs to work. She is always worried that she needs to do more. She gives all of herself to Isaiah and me. She truly is my gift from God.

Just like everyone else, we have struggles, and it is your kind words and actions that helps us through it. Thank you to everyone. Thank you for supporting us, thank you for caring about Isaiah. Finally, thank you Jackee for being you!!!

I did do something . . . I made you

Thank you…

I just wanted to shout out some gratitude for those of you that contacted our Senators! I can’t begin to tell you how much it means to Shane and I…and although Isaiah cannot understand all of this yet, someday he will know how much people cared about him and how loved he is. I will make sure that he knows all the people that “went to bat” for him. All the people that were willing to fight for him. All the people that loved his parents and therefore loved him. Like I’ve said before, I really don’t care for politics. And I’m not one to push my opinions on others…but this is really important!

Most of you that are parents probably didn’t even know that your baby was tested for PKU before you left the hospital with your little bundle of joy. Some of you might have realized that your precious little baby was poked on the heal about 24 hours after they were born – they told you this was the “newborn screening” test. No one thinks anything of it when they do this. That is until you receive a phone call to tell you otherwise. I honestly have never seen a parent receive that phone call. Or watched and waited as a baby is re-tested for confirmation. Or taken to Iowa City within the first few days of life to begin treatment. I haven’t ever seen it…I’ve only experienced it.

It’s a hard pill to swallow when doctors inform you that your child has a genetic disorder that requires a lifetime treatment of specialty formula and foods. But it can be even harder to hear that your insurance company isn’t required to help you with the medically necessary treatment plan. Just the other day, I was speaking with a lady about a disease their family member had. She said “thank goodness for insurance, XXX’s medication is over $1000 per month before insurance”. I had to bite my tongue. She is right. Thank goodness for insurance. Maybe one day I will say the same thing…

I hope that one day I can help a mother that is put in the position I was in. I hope I can offer some comfort to a family that is rocked to their core. I hope that I can listen and tell them that it is ok if they want to say “I understand that your baby has this, but I didn’t want mine to have this”. I can understand those feelings. No one wants PKU for their little one. I pray that Isaiah can grow up and be a role model, much like a 15 year old boy named Dallas, who also has PKU. I’ve heard of PKU children that have gone in front of insurance companies pleading their case for coverage. Children should not have to be put in those positions. People purchase insurance for these situations. No one asks to have many common diseases, just like people don’t ask to have PKU. I hope that people, including insurance companies and political leaders treat Isaiah fairly…not “special”, but normal.

One last thing I hope for……for more people to support the Medical Foods Equity Act. I’ve received confirmation from about 5 people that have contacted Grassley and Harkin for us. I’ve read 3 letters that our friends and family have sent. They are compelling letters! I’m positive I could not have written them any better myself! I’m about in tears when I read the heartfelt compassion people have for our little Zay.

I understand that many people do not fully understand PKU and maybe don’t realize how easy it is to contact our Senators and make a difference in Isaiah’s life. That is ok. It is my expectation that by reaching out I am educating people. Please feel free to contact me if I can help you understand further…

Past the seeker as he prayed came the crippled and the beggar and the beaten. And seeing them, the holy one went down into deep prayer and cried, “Great God, how is it that a loving Creator can see such things and yet do nothing about them?” And out of the long silence, God said, “I did do something . . . I made you.”

Thank you all for being such a blessing to our family!

Important Information - Medical Foods Equity Act

I'm not usually one to post my opinions on political topics, but I've received some information this week that is I.M.P.O.R.T.A.N.T!!! Seriously...very near and dear to our hearts and something that will affect Isaiah for the rest of his life. Of course as Zay's parent's we worry about him a lot...but something that many people don't think about is the financial implications of being born with a rare genetic disorder. I really try not to focus on how much his food and formula costs, because we would and will do whatever is neccessary to provide for our little boy and any of our future children, should they have PKU as well. But...sometimes laws just don't make sense to me...for example...


The Newborn Screening Saves Lives Act requires states to screen for PKU, however there is not adequate coverage for the required treatment.


And...


The average annual cost of medically necessary formula and food for PKU is approximately $7,000 in wholesale costs per year. Care for an untreated PKU patient in residential treatment is at least $60,000 (or approximately $200,000 per year for an inpatient mental health facility).


Basically insurance companies count on us (parents), to make the right decisions and necessary sacrifices to enable our PKU child to grow up normal and healthy. Because we do the right thing and take care of our child they don't need to pay anything. However, if we didn't do the right thing, and our child became mentally handicap...they would then provide coverage. ...just doesn't seem right!


Ok...I've said enough, I'll let you read the rest of information on the Medical Foods Equity Act. If you feel convicted, please contact our Iowa Senators and let them know that you know our Isaiah! It would mean so much to our family! (I've put Grassley and Harkin's information at the bottom of this post, it's so easy to send them an email!). Thank you!

The National PKU Alliance had an incredible time in Washington, DC last week to launch our Medical Foods Equity Act campaign in Congress. We now need your help to keep the momentum going in the U.S. Senate.

This federal bill would require all health insurance companies, including federal plans, to cover the cost of medical foods (formula and foods modified to be low in protein) for life for all people with PKU.

We started out the week at the American Dietetic Association (ADA) Public Policy Conference where 600 registered dietitians from across the country visited with their Senators and Representatives to speak about the bill. Then, the ADA held a Congressional briefing on the bill where we were able to reach even more Congressional offices to talk about why it is so important to ensure that the 20,000 Americans living with PKU and similar disorders have coverage for medical foods. We ended the week at a Medical Foods Conference sponsored by the National Organization of Rare Disorders (NORD) that brought together patients, medical professionals, industry leaders and government agencies to discuss access and reimbursement issues.

Last Tuesday, Senator Kerry (MA) re-introduced the Medical Foods Equity Act in the Senate. The bill is also co-sponsored by Senator Casey (PA). We now need you to contact your two Senators and ask them to co-sponsor the bill.

To help:

PLEASE GO TO http://www.npkua.org/index.php/your-legislators and look up your two Senators. Make note of eachSENATOR'S NAME and WASHINGTON, D.C. PHONE NUMBER.

1. Call their Washington, D.C. office and ask to speak with the Health Legislative Assistant.
2. Use the guide below to explain the reason for your call.

Thank you for taking the time to speak with me. My name is ___________ and I am calling to talk with you about the Medical Foods Equity Act, Senate bill number S.311. introduced by Senator Kerry. Feel free to provide your relation to the PKU Community.

3. Before going further, ask the Health LA if they are familiar with PKU. If not, provide the following:

• PKU is an inherited metabolic disorder in which the body cannot process a part of protein called phenylalanine.
• Untreated PKU can lead to severe, progressive mental retardation.
• In order to remain healthy, individuals with PKU are limited to a highly restrictive low-protein diet and must consume medical food every day for the rest of their lives.

4. Explain why the legislation is needed.

• Although the Newborn Screening Saves Lives Act requires states to screen for PKU, there is not adequate coverage for the required treatment.
• 38 states have laws governing medical foods, but they are inconsistent and many patients are denied access to treatment. In states with treatment provisions, many self-insured plans deny treatment under ERISA.
• The average annual cost of medically necessary formula and food for PKU is approximately $7,000 in wholesale costs per year. Care for an untreated PKU patient in residential treatment is at least $60,000 per year (or approximately $200,000 per year for an inpatient mental health facility).
• Medical foods are expensive because they are manufactured for treatment of rare conditions. The average family cannot afford them without insurance coverage or other assistance.
• The Medical Foods Equity Act is based on recommendations of the HHS Advisory Committee on Heritable Disorders in Newborns and Children and endorsed by over 40 organizations.

5. Explain why co-sponsorship is the right thing to do.

• An untreated child with PKU can lose 4 IQ points each month and will become severely mentally retarded before reaching toddlerhood.
• Children and adults who are off-diet also experience many other medical issues, including depression, impulse control disorder, phobias, epilepsy, tremors, and pareses.
• Women with PKU face a special dilemma in planning a pregnancy. Infants of mothers with high phenylalanine levels exhibit mental retardation, heart defects, and growth retardation.

Thank the Health LA for taking the time to speak with you and request their email address. Ask when they will be able to provide feedback from your Senator.

Chuck Grassley
135 Hart Senate Office Building
Washington, DC 20510-1501
Phone: 202-224-3744
Fax: 202-224-6020
email: http://grassley.senate.gov/contact.cfm
Web: http://grassley.senate.gov/

Tom Harkin
731 Hart Senate Office Building
Washington, DC 20510-1502
Phone: 202-224-3254
Fax: 202-224-9369
email: http://harkin.senate.gov/contact_opinion.cfm
Web: http://harkin.senate.gov/

Happy Heart Day, My Love!

LOVE HIM...both the 'little him' and the 'big him'! :)

Some thoughts on our week thus far...

Sleep deprivation is brutal!

Seriously.

Just ask my husband.

My poor, poor husband.

Currently…Isaiah is teething. Isaiah has a cold. Isaiah has asthma. Isaiah has Hypothyroidism. Isaiah has PKU.

Ok, so really only two of these things are “recent and new” topics of discussion, but still…they all hold true and right now they ALL are important and pivotal in our everyday life. Really, we do great, even excellent at balancing everything when we only have to deal with the thyroid and pku. Throw the other issues into the mix of our daily existence and it tends to be a downward spiral of exhaustion.

Extra breathing treatments – Albuterol every 4 hours.
Extra medicine – liquid oral steroids, that Zay does NOT like the super special grape flavor of...and there's no disguising this stuff!
Extra blood samples – sickness and lack of eating throws off his Phe levels.
All this on top of his everyday standard of care...and that's on top of him being an almost 14 month old toddler!

All these things….do NOT make for restful nights. Our poor little boy, cannot sleep because he has “coughing attacks”. Poor thing gets a bright red face, eyes start watering, and he struggles to just breathe. We haven’t had these issues in almost 4 or 5 months…it just bums me out that he has to deal with all this again.

I feel like we have a newborn baby again. Up at all hours of the night. Work all day. Home in time to make dinner…which has only consisted of frozen pizzas for Shane and I. We at least we put our child’s needs in front of our own, right!? His dinners consists of a rotation of…mushroom burgers, broccoli burgers, his special grilled cheeses, or broccoli casserole – with the standard sides of fruits and veggies…and I try really hard to tell myself that it’s OK when the food that I’ve spent a great deal of time, energy, and money on gets thrown on the floor, fed to the dogs, or half chewed and spit out. He’s a toddler…it’s what they do.

Back to my husband…he’s just simply amazing. I’m astounded that God gave me such a resilient, strong man to father my child. I think He knew I needed him when we get in these tiresome situations. And he’s a very busy man these days. Currently taking classes for his Masters degree. Serving on the leadership team for Love Cedar Valley, a huge kindness outreach project coming up this spring. Swamped at his job. He has weekly meetings at church. Works late almost every night. Finds time to stay up late and do homework. Helps with tons of household chores…especially laundry. Has gotten up with Zay the majority of the time in the past week. And is still motivated to workout! Plus – he puts up with an emotional, sleep deprived wife. Somehow in my world, sleep deprivation + sick child = emotional mess. Anyway – can you believe the perfectionism of my husband? Me either!

I feel like our world is mad-chaos right now. And I’m exhausted. But I’m amazed at the people God has strategically placed in my life. Specifically, my husband. There are others too. But my husband tells me often that I’m one of the strongest mothers he knows and sometimes I really need to hear that, because I feel weak a lot of the time. Last night, as Shane and I both resorted to leaving the dirty dishes in the sink, the toys spread throughout the living room, the laundry waiting to be put away, and none of Zay's food or formula measured for the following day…we began talking about Zay, about life, and about God. I mentioned to Shane, that I feel as though, I deserve to be put through these trials and struggles, because I’m often so much closer to God while going through rough waters, than when everything is smooth sailing. And he responds to me. “I think God’s got some big plans for us. We are experiencing these things because he's preparing us for something.” This is not something new that he just randomly said last night. Shane says this a lot. Shane has experienced a lot in his life and I believe him when he says stuff like that. He has been through trials and has seen God’s miracles first hand. I really have no idea what God has planned. And I don’t know when the pieces of God’s plan will be revealed. But in times of my exhaustion, I pray that my struggles will one day shed God’s light into this world.

2 Corinthians 12:9
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

Zay LOVES books!

I cannot tell you how many times we've read "I Love You Through & Through" or "The Perfect Christmas Tree" or "Chicka Chicka BOOM BOOM" ...but it is a lot! And as you are finishing one book, he is handing you the next book! He loves to be read to, which I'm sure makes his Grandma Becky very happy! :)

Zay, where's your nose?

I'm not sure if this is normal, but my friend Jenni and I were talking the other night about our little ones learning their body parts and her little girl did this too. Zay knows where his nose is...and thinks it's funny to stick his finger up his nose! We have been working on ears now too, and he always wants to stick his fingers in my ears. Mouth is the same way. Shane mentioned, we should probably kick this habit, before teaching him where is eyes are!!