We Run For A Reason.. We run for the special 1%

Doug and I have joined TEAM KIDNEY
and are Running for Reason
in the Houston 1/2 Marathon.

You all know our reason.

Maddie.

Maddie's primary diagnoses are IgA Nephropathy, Thin Basement Membrane Disease, Asthma, and severe allergies. However she has a number of other chronic medical issues that greatly impact her life.

She is strong.

She is a fighter.

She is courageous.

She is also an anomaly to the medical field.

As one of her specialists commented at an appointment a few years ago, we can only hope that one day her symptoms and issues will all be brought together and it will have a diagnosis that doesn't bear her name.

So Doug and I RUN FOR A REASON. 

There are so few people that have the combined kidney diseases that Maddie has that very little research is being done on them. It's hard to get any press when only 1% of the population is affected. 

Sad. 

Very sad, but that is the reality when faced with rare diseases.

So we run for Maddie and others like her... 

the nameless other children and teens whose diseases will never get headlines and research dollars cause there just isn't enough of a them to bring attention to their plight.

We invite you to join us in our efforts.

Cause Maddie deserves a cure.

Your tax deductible donation goes to The National Kidney Foundation. 

Click here for the link.

We Run For A Reason.. We run for the special 1%

Doug and I have joined TEAM KIDNEY
and are Running for Reason
in the Houston 1/2 Marathon.

You all know our reason.

Maddie.

Maddie's primary diagnoses are IgA Nephropathy, Thin Basement Membrane Disease, Asthma, and severe allergies. However she has a number of other chronic medical issues that greatly impact her life.

She is strong.

She is a fighter.

She is courageous.

She is also an anomaly to the medical field.

As one of her specialists commented at an appointment a few years ago, we can only hope that one day her symptoms and issues will all be brought together and it will have a diagnosis that doesn't bear her name.

So Doug and I RUN FOR A REASON. 

There are so few people that have the combined kidney diseases that Maddie has that very little research is being done on them. It's hard to get any press when only 1% of the population is affected. 

Sad. 

Very sad, but that is the reality when faced with rare diseases.

So we run for Maddie and others like her... 

the nameless other children and teens whose diseases will never get headlines and research dollars cause there just isn't enough of a them to bring attention to their plight.

We invite you to join us in our efforts.

Cause Maddie deserves a cure.

Your tax deductible donation goes to The National Kidney Foundation. 

Click here for the link.

Our 7th Kidney Walk

The 2016 Fort Worth Kidney Walk has come and gone. This was our 7th year to participate in a kidney walk and it really is such a special day for families whose lives are touched by kidney disease.

This year we had Maddie's Colorguard instructor and some of her colorguard friends join us along with some other good friends. It was really nice to have friends as our family was scattered and couldn't attend.

The best part of the Kidney Walk is remembering that we are not alone in this journey. So much of our life is defined by urinalysis and blood work. Here, every family and every team understands our walk.

  

There were so many people! I didn't even want to start my pace tracker as we had to walk so slowly getting started!

 I really loved seeing this. Maddie with her tribe. Makes a mom smile.

They messed up the course and the volunteers didn't seem to know how to get us going in the correct direction, so instead of being a 3 mile walk, we ended up with only a 1.3mile walk.. But you know, for us, that was okay.

Maddie had never completed the walk. She had never been able to walk under the finish sign. 

Well, because they didn't have us turn around and walk back the correct distance, she was able to finish!

That was a big deal! And since it was such a big deal, we sent her back through with our different friends.

 We finished the day with Kylie getting her face painted.

All in all, it was a really nice day.

Next year, maybe Maddie can walk the entire 3 mile course.

Nutritional Healing. Our hope for Maddie

Take a minute to think about you eat on a daily basis. This is not meant as a guilt thing.. just think about your favorite meals. your go to, every day staple meals. 

Now consider what you would do if you were told that the very things you were eating every. single. day. were making you sick.

Yeah.

This is what Maddie faced this week.

If you have been around here for anytime, you know that my Maddie girl has health issues. She is a fighter and has been for 16 years. We see more specialists than well, I don't know, but a lot.  And NOTHING works.

Maddie has been poked, prodded, pulled, pushed and pinched more times than we can count. Every time we feel like maybe, just maybe we can figure out SOMETHING! And pretty much every. single. time. we are given a no. I'm not saying I want a yes to some horrible disease. No thank you. But I invite you into the world of watching your child live with chronic disease and pain for 16 years and not be just a little bitter.

So let me get you up to speed. Maddie has pretty much been sick since August 25th... the first week of this school year. She has gotten almost well and then has gotten sick. I would say she has been functioning at 60% to 75% of her best for at least the last 6 months. During this time she has seen her pediatrician a few times, her asthma/immunologist a few times, her rheumatologist, the cardiologist and her nephrologist. She has also had numerous blood tests, an echocardiogram, and a contrast mri. Yeah. welcome to our world. My girl has real health needs. This isn't a case of momma just taking my kid to the doctor for a cold. I wish. To top it off, we live 2 hours away from her specialists. fun times.

Okay, I'll move on. Sorry, it's been a hard week.

Anyway, on Wednesday, Maddie saw the Immunologist and Nephrologist and then we went to a new place. We went to the Nutritional Healing Center. It was eye opening. This center I would say is on the fringe of "conventional" medicine, but given that Maddie lives in chronic pain and is constantly sick, I am desperate.

So. We saw Mary and had Nutrition Response Testing done.

And we learned that Maddie has a high amount of formaldehyde and radiation in her body. We learned that she is very low in zinc and vitamin c. We learned about the foods that Maddie's body really doesn't like. It's not an allergy, but it's about how her body processes food and stimuli.

And it totally made sense given how Maddie feels. But man.

Here is her list of foods to AVOID...

milk, wheat, beans (this includes all legumes like black beans and kidney beans, but also peas, green beans and soybeans!), honey, coconut, nightshades (white potatoes, tomatoes, peppers), eggs, turkey, pork, lamb and beef.

So what is left? 

NOT MUCH.

Chicken. Rice. Sweet potatoes and some vegetables.

It's really interesting to me as Maddie has been tested for so many similar yet different things. Before she was 2 years old we knew she couldn't have any milk products. She even had a stomach biopsy and was tested for celiac probably 7 years ago. The gastroenterologist was surprised that the result was negative. In fact, she really thought Maddie had Cystic Fibrosis. As does the immunologist. (two negative tests on that. The immunologist finally years ago said that the test only screens for the 30 most common strains of CF and that within those parameters Maddie doesn't have it. .. but he thought she did.)

Sorry, that's beside the point.

So Maddie is eating chicken and rice. That is not much fun. And to make matters worse (or better) her body is detoxing.  So she feels like she has the flu. My prayer is that very soon she starts feeling better and that the benefits of eating foods her body likes will be evident.

In the meantime, she is taking big doses of Vitamin C and Zinc.

And she is doing what she does. FIGHTING.

Cause in the middle of all of this, she had a winterguard performance on Thursday night and Championships on Saturday. She was BEAUTIFUL.

and they won the GOLD!!

It was so exciting!

She was so tired and hurting, but no one would have known.

And how are we doing with this new twist? We are doing what we do. Researching, learning and living. Doug is doing his best to fix this current mess by learning to cook some new and modified dishes so that it's not just chicken.

Tonight we had salmon patties made with salmon mouse and quinoa as the binder topped with avocado and jicama relish and brown rice/quinoa and asparagus. It was delish.

Up next, marinara sauce without tomatoes or peppers. Good luck Doug.

And if any of you out there know of any great recipes that don't use traditional ingredients, Maddie would sure love to have pizza. Well, you know, pizza without wheat flour or tomatoes or cheese or meats. Yeah.

Where do we go from here? I don't know. But we have hope.

And if you would like to walk down the road with us for a little while, we are looking for partners in the Kidney Walk. This year's kidney walk is on April 10th in Fort Worth. Maddie has never been able to do the full 3 miles. We are hoping that maybe this will be the year. 

It doesn't cost anything to join the team, but the goal is to get donations. All donations go to the National Kidney Foundation towards researching a cure for this disease. Even a $5 or $10 donation is welcome. And we need team members. 

Click on this link to join our team! 

Thanks.

What a week!

It has been one of THOSE weeks! Lots of good stuff happening, but no time to savor it as we have been so incredibly busy!

I have a little time this morning as it's raining and Kylie was up for a couple of hours during the night throwing up, so our plans for the day were cancelled.

Anyway, here is a recap of the week. 

Monday and Tuesday were state standardized testing days. Fun times for students and teachers alike. 

Tuesday ended with Lexi being given a child sized REAL guitar from her Papa. She is beyond excited. And it's baby blue! 

Wednesday morning started nice and early with the annual art show set up. However, we had to take down the existing cork and felt off the large display panels when we found DEAD BABY RATS AND LIVE SPIDERS!!!!

It was beyond gross. My student teacher and I spent all day cleaning and prepping the panels for new felt. (Unexpected and unplanned expense!) Once we had things clean, the exterminator came in and sprayed every panel and the building! The panels had NOT been stored on school property, instead they had been in a rented storage building. Needlesstosay, we are working on alternate storage!

Thursday morning we started putting up new fabric and hanging artwork. Thankful we had afternoon reinforcements in the form of tech theatre kids! They enjoyed helping us and we were exhausted! Prepping over 3000 pieces of artwork takes a while!

Friday morning came in a hurry and with it our annual hat day to raise money for the National Kidney Foundation. The kids in Stephenville public schools raised $1050!! Woohoo!

As soon as I could hand off fundraising duties and make sure the art show setup was in the final stages, I headed for College Station and the State VASE contest. This is the big time art contest in the state. 26 thousand pieces of art are judged around the state and 1600 are chosen for the state event! Yes, it's a tough competition! 

One of my students was selected! Here she is with her piece!

And since I was there and they needed workshop presenters, I taught "how to paint an acrylic landscape with a kitchen spatula" to about 80 students! I made a guide for this, I'll link it later!

I got home Saturday night about 8pm. Kylie woke up at 2am throwing up and then the rain started. 

So for the second year in a row we have missed the kidney walk. Major bummer for all of us. Last year we drove in hoping we'd get to walk. This year, Maddie said no, it wasn't worth it. They ended up walking in the drizzle, but I'm thankful Maddie didn't want to try. Her immune system would not have done well in the cold and wet.

But we were represented! The Tarleton girls were there and sent me this! What a blessing this bunch of girls has been to us!

And lastly, I desperately wanted a donut this morning. And I resisted! Yay me. I ate a pear with almond butter instead! Still want the donut though.

God Provides for "Team Maddie!"

I know I've said it recently, but I really feel like I'm living in the sweet spot of life! Here is another FANTASTIC example of this!

Since Maddie was diagnosed with kidney disease, we have been particpating in the National Kidney Foundation's Kidney Walk. This year, the walk is on April 6th, a Sunday, and that is a hard morning to get our family and friends together to go to something out of town. We had resigned ourselves with having a small team and just enjoying the morning.

Then I got an email from the walk organizer from the NKF that a group from our local college, Tarleton State University, had been in contact with her as they needed a project for their event management class and they had decided to do something for kidney awareness. She asked me if the group could contact us. I said YES! Two students came over to our house one afternoon and asked lots of questions and were super nice. They said that they would have a walk sign up drive on campus a couple of afternoons and maybe they could get some people to join our team.

I knew that their group would join, so that would be five students and I figured we'd get a few more, but as of this morning, we have a team of 50!!! Yes, that is FIFTY! They had over fourty students sign up to be on Team Maddie! How cool is that!!!

So we have a large group... now we just have to raise some money!  And guess what, to help us do that every campus is Stephenville ISD is hosting "Hats for Kidneys" on Friday! Every student is invited to bring $1 to school and pay to wear a hat all day! Every $1 bill goes to the National Kidney Foundation! And for student's that want to help, but don't like to wear hats, we have cool bracelets to wear! Over the years student's have started collecting the Team Maddie bracelets! It's incredible to live in a community that loves and supports each other the way this community does! We should bring in at least $1000 with this fundraiser.

But don't be left out! If you want your Team Maddie bracelet, let us know and we will save you one! Just $1 a piece and ALL funds raised go to the National Kidney Foundation!

Want to join our team? Click on the link below! ALL walkers are welcome! EVERYONE can be a ONLINE WALKER!

http://donate.kidney.org/site/TR/Walk/NorthTexas?pg=team&fr_id=6460&team_id=172251

 

 

Run For A Reason. I want to run... anyone want to pay for my entry fee?

I really, really want to run the Chevron Houston Marathon as part of the National Kidney Foundations, Run For A Reason, runners. 

Really.

Bad.

But the fee is a $350 tax-deductible donation + the entry fee. And it's not a committement that I'll raise the money by the January marathon. It's an immediate charge on my credit card. ugh.

So... here is what I am wondering.

Anyone out there want to "Gift An Hero" Entry for me?? 

I promise, if you purchase my entry for the National Kidney Foundation, I will run with PRIDE and DETERMINATION and make you PROUD.

https://secure4.marathonguide.com/register/houstonmarathon/GiftAHero.cfm?

Thanks for thinking about it.

And feel free to pass it on to anyone that you know that might want to purchase a "Gift A Hero" entry for me!