Out to eat!

Going out to eat tonight! ...Hmmm, somehow my kitchen still got messy...but all my cooking is done, kid's food is packed and someone else is cooking my food! 

PKU Appt.

PKU checkup today! Of course we took our standard "we were here pic!"...and also a pic of how Zay seems to win over every lady he runs into...be it the red hair paired with his smile or the fact that he asks for PINK bandage tape and TWO stickers...one to share with his sister!

Day 24 - 40 Days of Blogging

Today I was asked to speak to a University of Iowa Public Health class on the importance of newborn screenings and promote awareness for PKU. After the class I was able to tour the State Hygienic Lab and I learned soooo much...maybe even more than I wanted to know concerning the realities of public health! Very thankful for the experience to meet those working to keep Iowans healthy...Our State Hygienic Labs really are top notch...and its a blessing to live in Iowa!! :)

Thanks to the TA for snapping this pic!

The State Hygienic Lab...lots of important things happen here!!! 

National PKU Awareness Day

How much would you pay to prevent mental retardation in a newborn?

...Tomorrow is National PKU Awareness Day. I know it doesn't affect many of you, but about 3 years ago our family was taken by surprise when we learned our little boy had p

ku. There hasn't been a day since that I haven't thought about this rare genetic disorder, including the day we received the phone call confirming his sister's diagnosis of PKU as well.

You never think it is going to be you or your family...but sometimes it is. God calls YOU to carry the unexpected and in turn change the world. I'm so thankful for the family and friends who have surrounded us and lifted up our family...even when we didn't even know how we needed help.

There is a steep learning curve that goes with learning an entirely different way to calculate and feed your children. And an even bigger "pill to swallow" is learning that insurance doesn't always help pay for the food and formula that is essential to keep your baby from becoming mentally retarded. (Oddly enough, most insurance companies would provide a much more expensive coverage if the diet is not managed and the unthinkable mental retardation happens)

All in all, this journey was not the path I had expected, but it certainly was the road I needed to be on! Tomorrow we celebrate PKU...tell someone that you know someone with PKU - build awareness and support our efforts to secure funding for the LIFE-SAVING PKU food and formula! Zay and Ellie thank you! :)

Lots and lots of love...

Where to begin...?

At this point I'm so far behind I'm nearly positive I will never get all the things that are going through my head expressed aloud. I really planned on having some meaningful posts...things like...

A birth story...or some sort of thing like that; Zay coming to the hospital to meet Ellie; Oh...and her name and all the nicknames we've gone through (the two that are holding on: Ellie & Lizzy); All our friends and family meeting Ellie; The first week at home with our little girl; The PKU phone call; Her first doctor appointments

...you know, all the important things I want to remember about this first week with Ellie. But realistically, I haven't had an ounce of extra time or energy to spare...

But we do have lots to share.

The last week has been amazing. It's been an experience all our own. I'm in awe of how every family has their own story. How God chooses particular people to fulfill particular roles. I've been reminded of how special our family's story is this week. And I've been convicted of my own role as a wife and mom. Things aren't always comfortable in our life and sometimes they are downright burdensome. But the beauty of it all...it's ours; the undertaking, the love, the frustrations, the joy, the challenges, the blessings - it's all ours!

48 hours.

That's what kept going through my mind over and over last Friday. A bit of poor me syndrome. 48 hours was the length of time I felt like I was a normal mom. Yes, it is selfish. We received the life changing phone call diagnosing our sweet Ellie with PKU and I'm thinking about how it affects me. I'm not proud of the fact, but it is the truth. I was so proud of how well we were doing with nursing. I loved being her single source of nourishment and that undeniable connection it brings. I loved not having to think about measuring anything. I loved the uncomplicated feeling. I loved how good it felt to be a confident mom...knowing how much more intricate it could be, but wasn't. Not yet anyway.

Then we received the call. I distinctly remember receiving the call with Zay. I was honestly surprised by my reaction this time around. We all knew it was a possibility. 1 in 4 to be exact. But that also meant there was a 3 in 4 chance that she wouldn't have it! Before I could hang up the phone I was in tears.

In absolute honesty...my thoughts were: "have I been completely irresponsible to bring another little life into this world knowing she might have this challenge for the rest of her life?" The challenge of balancing feelings of grief and the complete joy of having our new little girl was hard for a couple days. Not going to deny that the not-so-fun and completely illogical postpartum hormones were helping any part of the situation. They definitely were not.

The unfairness still sometimes gets to me. Shane and I did not ask to be a carrier of this weird gene that makes it so our children cannot eat protein. Who thinks they will ever be the one to have something hidden like this? 

However, I eventually remember why God has blessed us with children. I know that our big boy and our little girl are perfectly made in His image. They are just the way He created them to be...PKU and all. I cannot worry about why and how and what people might think of us and our family. It simply doesn't matter.

The things that matter...the love that we have for our sweet kiddos! I might be a bit partial, but they are rockstars. Seriously. Zay has always taken everything in stride and through her first appointments, Ellie is quickly following suit. They get poked and prodded more than any baby or child should. And I am not naive to think that there aren't other kids that have it worse...that's the great thing about having kids with differences, you quickly become aware of counting your blessings. It could always be worse. And when you have it worse in a certain area, you can quickly gain compassion for others. Perspective is a beautiful thing! 

And so, we've arrived at the next crossroads in our life. I thought we'd be heading down one path but we quickly hit the road detour sign. We now turn around and take the more difficult and longer road to get to the same destination as every other parent. To love our children and lead them the best way we know how. There is no road map in parenting...and especially not in PKU parenting. 

There is something about realizing that in this world we don't always get to choose. We are sometimes made vulnerable when we want nothing more than to be strong. We sometimes need to feel that vulnerability in order to have faith. Strong faith. The kind of faith that makes you realize that nothing and no one in this world can shake you from resting in the palm of God's Hand...

I've now had a few days to absorb the idea of having two children with PKU and I'm finding my confidence again. I'm discovering that the drive and passion that took me months to find with Zay is only taking a few days with Ellie. My babies are amazing. And I'm going to figure out how to be the amazing mom they deserve. I don't and won't always get it right, but I will learn and they will know that they are loved. Of this I am sure.

36.5 Weeks...

Oh my...I can hardly believe that in a few short days I'll be FULL TERM! And this baby girl will be joining us very, very soon! 

I'm so excited, but very nervous as well. We have so many things we are juggling right now, with renovating our new house and getting moved in the next couple weeks, not to mention the most important thing weighing on our mind...our little girl's health. 

We have continued to have ultrasounds every 2 weeks to monitor her growth. Even though we thought we would be done with these, the doctors have recommended we keep a close eye on her. The main area they are watching is her head size. They believe that she has a small head basically due to familial reasons, however we won't know anything for sure until she is here with us. The ultrasounds do not show any other markers or indicators that she is unhealthy in any way, so we are all hoping that she is just on the low end of the spectrum for head size. This has been very hard for me to release my worry, but I know that God is forming her just the way he has planned. We are certain that she will be perfect, regardless of anything that might pop up. As expected we have everything in line for her PKU and hypothyroid screenings to be rushed and we will know if she has either as soon as possible. Beyond that, we declined doing any prenatal screenings, etc so we don't know any further information at this point. 

My prayers have been consistently that God help Shane, Zay and I be the perfect family to this little girl. I know he has hand picked us to love her! Each day I'm amazed at how Zay's presence in our family is perfect! He's brought so much joy and love and perspective and humor to our family, only God could have orchestrated something so special. I know that our little girl will bring about the same perfection. I know there might be some issues that come up...expected and/or unexpected. I pray that we can handle all the emotions and know that God is with us each and every step of the way. 

My appointments are down to weekly now too! And this week I was dilated to 2cm. Yay! Although I don't put a lot of weight in that number, knowing that I was 1.5cm at 36 weeks with Zay...then went overdue! But it is still exciting to know that my body is preparing!

And here is what is will probably be my last prego-pic. I'm nearing the size that I'm just uncomfortable and big and not enjoying having my picture taken anymore! :) 

Stay tuned! I hope to have a post up on our new house soon...given that I don't have a baby or anything! :) Thanks to all our friends and family praying for our little girl and helping us with all the transitions we have going on in our life right now. Even with uncertainty, we are blessed beyond words!

A few food favorites...

Zay has taken to a couple new foods lately...yay for a little variety! 

The first new food...Biscoff Spread. Sort of like his version of peanut butter! And the best part is...you can buy this stuff locally! I found it at Wal-Mart...yippy! I tried it and in my opinion tastes like graham crackers! Not too bad at all! 

 

Zay's lunch...I started out giving him 1/2 slice of regular toast and 1/2 slice of toast with the Biscoff Spread on it...he didn't hesitate eating the stuff that looks just like Daddy's breakfast! And a little homemade applesauce to top it off!

The other food of choice...smoothies! I think I've mentioned it before, but Zay has never tried juice yet. He drinks either his 'milk' (aka formula) or water. So smoothies must taste really yummy to this guy, because he finishes his off without any hesitation! Yummy!

National PKU Awareness Month

I recently joined the Iowa PKU Foundation board and although I'm not too involved yet, I have a feeling it will be a part of my life for the foreseeable future. On our conference call the other night I was reminded of what I had intended to do on our blog a long time ago.

To advocate. To support other families dealing with PKU. To be a friendly face to new moms who need to know everything will be okay. And to be an example of a family who has lived through it.

So, in honor of PKU Awareness Month, I finally got my "PKU Page" done! Maybe some of you have noticed tabs at the top of our blog...one of them reads"PKU". And now it finally has the links to specific blogposts I've done in the first few years of Zay's life relating to PKU. Looking back at some of those posts made me realize how painful unpredictable circumstances can be. Brings back feelings...happy ones, sad ones, and everything in between. My hope is that others can see that although our family isn't perfect - we've survived and thrived after learning of the genetic disorder that makes us unique.

So...it's there. A little 'ol link that takes you back in time and shares our journey on discovering a little thing called PKU. Tell the world...Happy PKU Awareness Month! 

Unexpected...but it's all good!

Not long after our 20 week appointment with our little Miss, I received a phone call from my OB. First to tell me  I needed to change my thyroid medication and then she went on to tell me the doctor that had reviewed our ultrasound recommended we come in for genetic counseling. 

I had to chuckle, because at our last appointment, Shane and I explained further in depth to my OB what PKU was, what it means, why there is a chance for our next child to have it, and how we handle it with Isaiah. Who needs 'counseling' on the topic? We've got this. ;)

And I should clarify, I would not expect my OB to know this information. She takes care of me and baby right now. And right now we are perfect and healthy! There is no evidence of PKU. PKU is something that we find out about after our bundle of joy is born! 24 hours after her first meal to be exact.

However, my heart sank when she mentioned the doctor advised we be seen again for another ultrasound. I think I started giving her twenty questions...wondering why we would need to be seen if everything on the first ultrasound was fine?

Well....it seems that since we know there is a chance for our little girl to have a genetic disorder, my pregnancy is considered high risk. And therefore my ultrasound was flagged because of the history of PKU. Even though our little girl looks great. 

Yesterday I received another call, from the genetic counselor this time, who further explained to me that we had options of having an amniocentesis done to find out if our little girl has PKU before she is born. Shane and I discussed this, and decided that there was no point in taking a risk, even if it was only a small risk just to know sooner. The newborn screening is very effective and we have asked if we can have her tested at least twice for PKU after she is born just to be sure. I think our plan is to discuss with the genetic counselor if there could be any sort of rush on her test, since we know there is a 25% chance that she will have it. I would prefer to not have to come home, only to have to go back to the hospital like we did for Zay. The biggest relief for me is that we are the most emotionally prepared we can be for news of PKU. Physically I know the challenges of PKU will still be there with the extra work involved, but this time around I know we can do it and I know the amazing outcomes of our hardwork. 

I think I've mentioned this before, but after Isaiah was born and diagnosed I truly believed it meant no more children for us. And when I did think about having another baby, I was distraught with the thought that I would be putting another baby at risk for having PKU. Then, I met real life families that had LOTS of children! Some had PKU, some didn't and they were ALL thriving and doing so well! It gave me so much hope for our family! Some people may still judge us for expanding our family while knowing the risks, but Shane and I are confident that God will bless us with exactly what He has planned.

So after talking with the genetic counselor and her explaining the doctor's recommendations to us, we will have a level 2 ultrasound with my next appointment so they can check on our little girl again and make sure there are no concerns that would cause them to worry that she isn't perfectly normal and healthy. I don't expect them to see anything different than what they saw on the first ultrasound, but it's better to be certain! I'm not exactly sure what a level 2 ultrasound involves, but what I gathered from the genetic counselor was that a doctor will be present and they will just look at her with a little more detail. 

1 Peter 5:7 says: Cast all your anxiety on him because he cares for you. And that's just what I'll do. 

Routine & Change

We are gearing up for our next appointment in Iowa City with our PKU doctor/dietitian, and because I know change is coming, I thought it is a perfect time to document what has been our routine for a long time. Long time meaning at least for the past year, maybe as far back as when Zay was 9 months old! 

We do it every morning. It doesn't matter if it's Monday or Saturday, whether we are traveling or at home, or if it's Mommy or Daddy who does it - we have a routine. And Zay always remembers how it goes. 

We make "Zay's milk". 

We will soon be adjusting his formula to allow him to have a little bit bigger portions at his meals. The boy just keeps growing and his levels have been creeping up, so I contacted our doctors to let them know that it's time to increase the Phe from food and decrease the Phe from his milk. 

And today, because it has become such a common story-line in our house I decided to take some pictures of just how predictable our mornings have become. And I thought capturing the moments of this scenario would make it a little more endearing, the next time I'm heckled halfway through my bowl of Wheaties. :)

The very first thing on our agenda in the morning is Zay's thyroid medicine. I'm usually slipping the little pill into his mouth while he's racing around the house trying to catch-up with Daddy before he leaves for work. Technically, he's supposed to have his medicine 30 minutes before he has anything to eat or drink. This can be a little unrealistic to a demanding 2-year old, but we do the best we can! 

Usually once Daddy is out the door we get sat down for breakfast. We always have a sippy-cup full of formula from the day before for Zay to have with his breakfast the next day. Just works out better for us to schedule it like that, so he has something already made up first thing. 

However, it doesn't take long before he thinks it's time to make more. (It makes no difference to him if he actually needs more formula or if he is just ready to help make his milk!)

After explaining to Zay that "Mommy will make you more milk after she finishes her breakfast", this is what I see...Zay taking matters into his own hands! Hauling, dragging, staggering across the kitchen floor with the first ingredient to his formula! 

He's very good at getting the ball rolling. The other day he brought a box of his Macaroni & Cheese to Shane, then came to find me because Shane wasn't getting up to do the job (To Shane's defense he was taking a quiz for his graduate class!). The next thing I know, Shane is calling me because Zay is pulling the pots and pans out of the cupboard in order to make his Mac & Jack. The boy takes initiative! 

I've always been insistent on letting Zay help in the kitchen from a young age. I know that cooking is going to be a big part of his life, so I'm determined to let him help and get him interested! In turn, he consistently knows there is a place for his chair by the counter!

Then the mixing begins...

170 grams of skim milk. 

Add 1.8 mL of his iron drops.

Add 1 mL of his vitamin. 

Add 90 grams of Periflex Junior.

Add water to make approx 25-30 oz.

I assure you - if we are in a hurry to make up his concoction, I will NEVER get the milk and formula to hit exactly the 170g and 90g on the scale the first time. There will be adding and subtracting...adding and subtracting, until I finally get the scale to read correctly!

After the water is added...Zay's job comes in. We sing a little "SHAKE, SHAKE, SHAKE!" song and he goes at it!

FINALLY...time to get the sippy cup filled up! 

Then....only then, is our boy satisfied with the work we've done. And mom can get back to her soggy Wheaties. ;)

And he's such a obedient little boy - he even puts his chair back after we're done. Multitasking of course...drinking his milk while pushing his chair!

Clearly, it's time for trains after all that...

Or maybe a book to read? .......Let's be real - he's fishing out a Leap Frog video to watch. But the books will come. Guaranteed. And most likely, it will be before my Wheaties are gone.

Undeniably, at times, I yearn to just be able to go to the fridge, grab milk, juice or whatever else I can find and fill up Zay's cup. No measuring. No scale. No calculating. Seems so simple. So quick. And to have the option of letting someone else get him a drink, seems like heaven at times! 


Nevertheless, how content I am with going through this process each day. It means that I get to teach my little boy. I get to show him that I love him in the simplest ways. And I will make his milk for the rest of my life if it is how my love is displayed best. He will know he is special. He will know he is loved. I will be sure of it! 

Blessed. We are.

I've been a mom for approximately 27 months to a little boy with carrot-colored hair and the heartiest personality to ever come out of a 36+ inches. In just over two years he has not only grown to be at least half the height of his mother, but he has discovered  a great happiness in life that God refills him up with each new day. We won't mention the "rarely-sited-in-public-but-always-seems-to-come-out-at-home" two year old tantrums. They are present now and then too.

I have uncovered a simplistic delight in watching Zay acquire knowledge throughout his days. I'm finding that I cannot insert Zay's learning abilities into a neat and tidy little box. Shane and I have always joked that those "what to expect the first years" books are not written for our family. All we can predictably expect is that our Zay is going to do things his way and in his time. And that is precisely who God made him to be. Not just our son, but His son. I think God uses Zay to consistently fill a role as a perspective changer for me. Teaching me that normal can be the uncommon. What's presumed can turn into the unexpected. And what we experience in life can leave us humbled, but appreciative.

I tend to hold on to these truths when I let my mind worry and wander to "is Zay on track", is he doing, saying, and acting the way people assume a two year and 3 month old would? Ah, the unnecessary anguish this can cause a momma! 

Just when I start to get concerned, Zay yanks me back to the real world and amazes me with what he perfectly and positively comprehends! I'm fully aware that Zay is behind in speech. I'm also thankful that two different speech pathologists are not concerned with his delay. It is believed that Zay is going to take off when he is ready. I agree. 

About a month ago, we were sitting at the dinner table when Shane started quizzing Zay on his letters. To both of our amazement - Zay started spouting off the phonetic sounds to at least half the alphabet! Try to get him to say the actual letter name - not going to happen. 

I know this is not how most kiddos learn their ABC's...but I'm thrilled this is how Zay is learning. In his own unique way, he is gathering the knowledge in that little brain and slowly we are hearing all that he's attained. What a joy to recognize the beauty in uncommon, individual ways of achieving education. 

Blessed. We are.