Health

What I want for Christmas…Low Protein food for Zach & Madie

In the last week, a few people have asked me what I wanted for Christmas. IMG_1651

That’s really an easy question. I personally don’t need anything. I personally don’t want anything. Ok, that’s not true. But, there’s nothing I really need.

I would like Santa to bring Low Protein food for Zach and Madie to the Raitz house this year. 

That’s it. Easy. If you don’t know what I’m talking about, here’s a little background.

Two of our 4 kids have Classic PKU. If you haven’t ever heard of it, check out the video below. The mom in this video is great and nails what its like to have PKU and what PKU is all about.

In this video, the mom talks about the costly food for PKU’ers. That’s really one of the toughest parts of having two kids with PKU. Low Protein food is ridiculously expensive. And, for some reason, the government hasn’t mandated insurance companies to reimburse the cost of this special food. It’s actually really frustrating, but that will be another post.

BUT…we are so blessed to live in a state that provides medical formula for our kids. Someday we will have to start paying a portion, but right now its free. A HUGE BLESSING. Why? Because they need that formula to be healthy! And, it’s crazy expensive!

Back to the food. You and I pay what for a loaf of bread? 2 bucks? 3 bucks? Low Protein bread costs $12.99 a loaf and you have to have it cold shipped which is a little bit of cost as well. We could spend $500 and get 20 or so items and those wouldn’t last too long. Especially with a son about to head into the pre teen years.

So, that’s what I want.

I know, it’s selfish, but I was asked!! Hahah

What do you say Santa, can you bring Zach and Madie some of their favorite Low Protein foods?

 

A morning with my Zach

A typical Saturday morning for me goes like this…I get up around 6am, I head to Celebration Cinemas in Mt Pleasant and I takeIMG_3194 a prayer walk around the theater.

Then, I head to the office and I finish preparing for Sunday at Thrive. I’m there as long as it takes me and then I head home and hang with my family!

Well, last Friday night we had our staff Christmas party and we got home pretty late. Needless to say, it was an amazing night of laugher and fun!

I forgot my phone in the van. That meant that I didn’t sent an alarm. Well, I slept in till 7:50am! I can’t remember the last time that happened!

As I was getting ready, Zach said ‘Dad, can I go to work with you?’ I went to say no, and then thought, why am I saying no? I explained that he would have to hang out in my mom’s office on the computer and he loved it!

We went to the theater and we did the prayer walk together. I told him to put on some worship music and IMG_3198talk to God. I did the same thing. It was awesome!

On our drive to the office, we talked about a ton of stuff.

It was the coolest time ever! 

We talked about school. Who his best friends are? Why are they his best friends? We talked about his PKU and how he’s doing with that.

Then, we talked about Church. Gosh, this kid loves our Church and of course I love that.

Here’s what amazing…I almost missed it! 

It’s not all the time I can bring my kids to work and still get done what I need too, but last Saturday was a day that I could and my first reaction was to say no.

I’m so glad I took a moment and rethought that.

I know the older my kids get, I’m gonna have fewer and fewer of these moments and I have to take advantage of single one now.

I loved my morning my Zach and I looked forward to many more!

It’s PKU Awareness Day

Our lives changed drastically on June 11, 2004. I still remember it like it was yesterday.

I was sitting in my office and a phone number I didn’t recognize called me. That same number had called me earlier a few times, but I was in meetings and I didn’t recognize it, so I didn’t answer. I finally answered and a nurse started to explain that my wife and I needed to bring our 2 day old baby boy to Ann Arbor to the U of M hospital immediately.

I was super confused. Zach wasn’t even born there. She began to tell me that my son had tested positive for a rare genetic disorder called PKU and there was a clinic at U of M for families with PKU.

I had never heard of PKU. Of course instead of listening to her, I immediately started to google PKU and as I started to read, my stomach began to drop. That’s what happens when you don’t listen to the professional on the other end of the phone and you frantically start googling things.

I hung up and agreed that we would bring in Zach immediately. I sat back in my chair and literally felt all the air go out of my lungs.

I called my wife and started to explain to her what was going on and at the exact moment I called she was feeding him a bottle and had to stop immediately because the bottle was filled with way too much PHE. A term that has now resided in my family for 10 years and dictates the diets of both Zach and Madie.

The waiting room was packed that day but all I remember is being rushed back to talk to a team of people that were waiting for us. They began to explain that Zach had PKU and then they started to explain this new life that we were about to start.

Now, Zach was our third. Bekah and Bobby paved the way and by number 3 you pretty much have some things figured out. Everything was different!

For starters, we were told that everything Zach ate had to be weighed, measured and tracked. That’s when a gram scale became king in our house. Then we found out that Zach would be on a medical formula for life. They showed us how to measure and track his formula and eating. They told us about the blood tests.

Then the hammer dropped. They told us he would never be able to eat foods high in protein. Foods like…chicken, steak, burger, ice cream, pasta, bread, milk, cheese, rice, beans. For someone who loves food, my head was spinning.

Finally they told us that he would be on this special diet for life. There wasn’t a cure, but by staying on diet, he would be healthy.Yes, such a HUGE blessing!

But, if he went off diet, the acid in the protein would attack his central nervous system. And when that happens, nothing good comes from it.

I feel like Tracie and I took turns holding him and each other that night and we just wouldn’t let him go.

Fast forward to 2014. We have two amazing kids with PKU. Honestly, I would do anything for them not to have PKU. Not to have to worry about their blood levels and their PHE and the amazingly expensive food and the fact that insurance companies aren’t mandated to reimburse families for the crazy high price of their food. IMG_1771

But, they are both doing great! We’ve had some struggles. The kids are amazing and it’s just a part of our lives now.

I do pray everyday for a cure. I pray everyday that God would use this to build their identity. I pray everyday for help with the ridiculous costs of their food.

Today is national PKU awareness day and I wanted you to know about our journey and story. IMG_1766

 

The final week of ‘Pull your head out of your app’

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A super humbling facebook post

Sunday afternoons are pretty fun! 

Not because of football! But, if I had cable that would be another reason they’re fun!

Because typically, Facebook just lights up about peoples experiences that morning at Thrive Church!

It’s so humbling to grab my computer and read away.

It’s humbling because I love, LOVE what God is doing in peoples lives. It’s just amazing! To hear stories of life transformation. To hear stories of life change. To hear stories of peoples excitement about what Jesus is doing in their hearts is just…

Amazing. Humbling. Fantastic. Honoring. Awesome. 

And, to be a part of this church, even though its a tiny little sliver…again, is so humbling.

I’m so blessed to be Thrive’s Pastor and it is not something I take lightly. I love that I have been called to be Thrive’s Pastor, I love my work, I love my job and I love the people that are a part of Thrive Church. I love Central MI and I love the vision we have for reaching the unchurched.

On Sunday, there was a Facebook post that really made me sit down. It wasn’t bad. It was so stinking nice and so humbling to read. Screen Shot 2014-10-13 at 5.43.47 PM

It was posted by a Thriver I very much respect and her words just hit me.

They hit me hard!

In the post she said I was brave.

Gosh, those words just hit me.

You know why?

Because Church Planting is Hard! Don’t let anyone tell you that it’s not. This has been the hardest endeavor of my life.

It has been difficult, it’s been an uphill battle and there have been times that have been so hard, I wanted to scream! Then, hit something and then move to a beach!

No, really! Planting a church is not easy. I’ve learned that and I’m only a year in! I don’t care if you have a ton of start up money or no money, it’s hard.

It doesn’t matter if you start with a large group of people or a small group.

It’s just hard. There are challenges, there are obstacles, there are lack or resources, there are negative words by Jesus following people, there is the weight of being a part of peoples lives and it’s an uphill journey.

Now, it’s a GREAT journey! To see something start from nothing is AMAZING! To pray and pray and pray and then to see God answer your prayers is AMAZING! And it’s all worth it!

Because people matter to God. Because people desperately need a Savior. Because people desperately need a community that loves and cares for them.

The local church is the hope of the world and we need more dynamic–life-giving–not bent on traditions churches!

So, I know this post was a little self-servicing. I hope it didn’t come across that way.

I was just really honored and I wanted to share.

Facebook 101…The real reason to use facebook

There are so many reasons to use Facebook. Too many to list in this blog post. But, what I hope to convey is what I think, the only real reason to use it.

And yes, I understand I’m going out on a limb a bit.

I’ve been working on a series of posts about Facebook for a few months now and I’m ready to start putting them up. So, here’s my first go at it.

Here’s what I know about Facebook…

It can either greatly improve your life or it can bring a world of negativity into your life.

The great thing is…you get to choose.

It can either encourage you or suck your time away from you.

The great thing is…you get to choose. 

It can either be used a tool to communicate with friends and family or it can be used to spread negativity.

Again, the great thing is…you get to choose. 

This is how powerful this simple online website is! It has the potential to bring life to people. To get them connected. To get them engaged. But, way too often it does the exact opposite. People get more frustrated, they become more envious and jealous and the negativity just fills their mind.

In fact, I would be rich if I had a nickel for every time I heard someone say ‘I’m so tired of the drama on Facebook’.

Ok, so what’s the real reason to use Facebook? Instead of listing a ridiculously long list, I’m just gonna cut to the chase and post what I believe is the only real reason to use Facebook. Here we go:

To bring life to others. 

Yup, I really believe it’s not about you. Its not about me. It’s about bringing hope. Bringing joy. Bringing new ideas. Bringing new connections. Bringing new relationships and encouragement for old ones.

It’s all about…bringing life to others.

Enough with the hate. Enough with the negativity. Enough with the late night woe is me posts. Enough with hiding behind it. Enough with the name calling. Enough with the ‘my life is better than yours’. Enough.

Enough. Please. 

Please just use it to bring life.

Don’t know how? Well, that’s tomorrow’s post.

4 Ways to make your daddy/daughter dates great

Yesterday I posted a bunch of reasons to take your daughters on daddy/daughter dates.

Today, I thought I would give 4 super easy ways to make your daddy/daughter dates great!

4 Ways

1. Put the date on the calendar and let nothing else trump it.

NOTHING!

2. Spend a few days asking your daughter what she wants to do on your date.

Give her ideas, but let her dream. If she’s old enough, text back and forth about it.

3. When you’re on your date…Listen, Listen, Listen. In order to do that, you have to ask a crazy amount of questions.

Questions like…

  • What’s your favorite…Band, Singer, Web Page, Food, Bible Verse, Color, Store
  • What friend cares for you the most? What do you do for them?
  • What kind of boy makes you smile?
  • How much do you think Jesus loves you? Why does He loves you?

4. Do whatever she wants.

Don’t say no or not now. And just do it. Ok, don’t rent a private jet and fly to London for her to hang out with One Direction! Do it if you can! But, there are a million ways to make the date special, so…make it special.