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.

Strength and Dignity

"She is clothed with strength and dignity,

    and she laughs without fear of the future."

Proverbs 31:25

Yellow Jacket Band Photo.. not mine. I wish.

Maddie rocked her performance on Saturday for the UIL contest. Well, the entire band did, but of course, I was focused on my girl.

It is so wonderful to watch her come alive on the field. 

I know that we savor these moments more than most as we know just how fleeting these times are. But for today.. she is doing well and able to do what she loves.

We are so thankful.

Because I can

I ran 125 miles in the month of August.  That's the most miles I have ever run in a month.

I'd like to celebrate. And one day I might.

But my heart is heavy.

This has been a hard week for Maddie.

(Of course it's been a hard week, the first week of school each year is hard. With two-a-days, she starts the year worn out and it's downhill from there!)

First day of School

Nonetheless, four days into the school year, Maddie's kidney has flared along with her asthma and she is one sick girl.

Friday morning I took her to the hospital for blood work between a pep rally and an Algebra 2 quiz. Her urine is brown. She made it all day at school, reported for practice on time and performed at the football game.  Want to see her performance?  Click here!

Immediately after the performance I took her home.  Since 9pm Friday night she has been in bed. It is now 9pm Monday.

The only other time she has been out of the house was at 11pm on Saturday night when I took her to the emergency room. Her asthma was out of control and we needed help.

Since the hospital visit she has been on breathing treatments every 3-4 hours along with a heavy dose of steroids. I'd like to think that she could start weaning herself from these soon, but given that she can't even walk across the house without getting winded, we shall see.

She would also like to go to school tomorrow.

So in the midst of Maddie's crisis, I am running longer and stronger than I ever have.  I can feel myself getting leaner and faster.

And it hurts. Cause Maddie can't run.

We are even selling her treadmill.

She wanted to run, but her body can't. We know longer want the reminder.

It's times like these that are hard. I have to remind myself that it's okay to get down. It's okay to eat the donut for breakfast on occasion cause your child is sick and there is NOTHING YOU CAN DO ABOUT IT. But I can't and won't go back to the daily donuts and being 40+ pounds over weight.

Instead, I am going to get up at 4:15am and run.

Because I can.

What triggers a "relapse?"

I hope there are a lot of you out in blog land that have no idea what this picture is or means. But in our house, it's part of life. It follows my.. "I need some pee." So Maddie or on occasion a different child goes and pees in a Dixie cup and sets it on the counter for me.

Tonight's reading shows that Maddie is spilling ketones, blood and protein in her urine. All of this from a stomach bug.

Lexi had the bug too. They both started feeling bad Monday after school but Lexi was better by Tuesday afternoon and fine today. Maddie hasn't thrown up since 10am Tuesday morning and still can't get out of bed. You just never know what us going to throw her into a relapse.

I am really hoping that she feels stronger tomorrow. Her first colorguard/band competition is Saturday. When we were talking about it tonight, in her normal stoic way, she sighed and said she wants to be able to go, but if she can't, it's not the end of the world. 

I KNOW THAT! 

But I'm the one that's supposed to have to say things like that and reassure her. 

I'm mad that her body has robbed her of a carefree child-like approach to life.

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

 

 

what does it mean to be .1 in 100,000?

One of the absolute best things about Maddie being relatively healthy the last couple years is that I'm not constantly searching the internet, reading the latest on forums and picking apart medical journals.

In fact, Maddie has done so well in the last year or so that I hadn't even read the recently published articles specifically about IgA Nephropathy. (This from the woman that has read countless scholarly articles about pediatric kidney disease and has a spreadsheet with over a hundred entries on it filled with urinalysis results, lab reports and doctor visits!)

But this week, the National Kidney Foundation posted on their facebook page about the new blood pressure guidelines for people with kidney disease, so I decided to refresh my memory and read the article.. and that lead to their website... and that lead to a couple of new articles on kidney disease.

Interestingly, one of the articles I read is about updated care for patients with glomerulonephritis (IgAN is in this family.) If Maddie went to a nephrologist presenting symptoms today like she did back in 2007 (?) her treatment might have been drastically different and much more aggressive. Hopefully with the new treatment protocols, patients and families don't have "lost years" while they try to get a diagnosis and treatment! I consider 2007 and 2008 (I think those are the years!) l"ost years" as all we did was survive and live in doctor's offices!

Reading these articles that have come out in the last year or so gives me great hope future generations of children with glomerulonephristis as more and more research is being done. It's interesting to read these studies where the pool of patients is 20 to 100 IgAN patients (and that's considered a strong, well funded and supported study!) I am reminded that while IgAN is the "most common form of primary glumerolnephritis" with up to 30% of all glomerulonephritis patients being diagnosed with IgAN it still a tiny percentage of people.  Take a look at this table below...



That's upto 30% of 7.6%.... What does that mean in numbers? Well, a recent article states that adults with IgAN are 2.5/100,000 people. Children with IgAN are .1/100,000.

Yeah. Not many people. No wonder there isn't much research!

These days I'm not worrying about research and prognosis so much. You get to a point in life that you have to say, I can't worry about that! We don't know how long Maddie will stay in remission. We don't know if it will progress to end-stage renal disease. Thankfully we are too busy LIVING life to worry about those things! 

My Maddie is Tough. Tougher than her mom.

Some days are really hard.

Today is one of those. I felt crummy and stayed in bed most of the day. Maddie felt crummy and stayed in bed too. The difference? I know that my aches and pains and allergies will quickly go away. Maddie's pains never leave her. They just abate enough to get through the day. But the last couple of days Maddie has been in constant pain.

And it's spring break. Maddie's peers are vacationing all over, on highs and lows from cheerleader tryouts and doing teenager things. Maddie is curled up in a fetal position in her bed with tears coursing down her face in pain, thankful that it's spring break because she won't miss another day of instruction at school. nice.

Today I'm not taking it well.

Over the last 8 months, Maddie has had a new pain. It's manifested in her ear. It's her right ear this time. It's not infected, she is not running a fever, but it's inflamed and swollen. We have tried everything we know to do, but nothing helps. My mother-in-law who also has a host of auto-immune issues says this happens to her as well.  If Maddie presses just under the ear on her neck, she can hear better, but it doesn't take away the pain.

We see Maddie's immunologist on Tuesday and the rhumetologist at the end of the month, I'm really hoping that maybe we can figure something out.

I'm scared though. A couple of weeks ago at her nephrology appointment, the doctor said that he thought her IgA was active due to the episodes of swelling. Given that most auto-immune diseases don't manifest until puberty, I'm beginning to truly dread Maddie growing up. She turns 13 in May.

So, while I don't want to be Debbie Downer on your spring break, take a moment and be thankful for healthy bodies and healthy kids. As I watched facebook as families were sending off their kids for trips, I wondered about how different our raising Maddie would have been if she had been healthy. By 7th grade, I had been to week-long camps a number of years and vacationed with others. Maddie can't, and for the first time I am really truly struggling with this. I guess because we are now to years that I remember really well. These trips that she is missing are trips that were defining ones in my life. I pray that the fact that she is missing them is not defining for her.

Maddie's Team for the Kidney Walk

It's time for the National Kidney Foundation's Kidney Walk. 

Maddie wants to have the largest team, so we've got to get on it!

Date: March 26, 2011

Place: Fort Worth

Register to walk with us, or donate dollars!!

Thanks!

Reality Bites

Sometimes reality has a way of sneaking up and slapping us in the face when we least expect it. Yesterday was one of those days.


I had a message from The Pediatric Pain Management Center at Children’s Medical Center. They were ready to make Maddie’s initial appointment.

It’s not that this was a surprise; there have been volumes of paperwork for our pediatrician to complete.

I’m just not ready to walk this road.

I’m not ready to accept that my child lives with chronic pain.

It’s hard to explain it. Given that we live the rollercoaster of Maddie’s health, this next step shouldn’t be a blow, but it is.

Every morning I watch Maddie to see how she’s walking. I check her face to see if it’s puffy. I do the mommy once-over and evaluate the day. I do it in a heartbeat, I don’t even think about. It’s part of the morning routine.

I guess not every mother does this every morning.

Today I am going to call and set up Maddie’s appointment. I asked her about it yesterday. She’s been doing so great the last few weeks that I had hoped she would say that we didn’t need to do it. But she wants me to call. So I will.

My child has incurable kidney disease.

She looks great.

She’s in chronic pain.

The Kidney Walk.. a Success!!

(The entire team consisted of Maddie’s Team and Team Carnes [Jerry’s team] pictured are: Doug in the back. Middle row: Hudson in Libby’s arms, Melody, Sissy in Katy’s arms, Kylie in the sling with me, Jennifer, Jerry and Morgan.  front row: Abby, Maddie, Lexi, Dillon and JD.)

The morning started bright and cold and getting our household out the door for a day filled with adventures was a feat in itself!  But we did it and arrived at the park for the walk on time.. whew!

Here we are getting ready for the walk and along the trail.  We did really well for a group that had as many young children and strollers as we did!     
About a mile and half into the walk there was a spot where you turned left and circled around a while and came back.. we did the come back.. by that time Maddie was lagging behind and coughing and I was carrying Kylie in the sling, so Doug and I willingly cut the 5k down with Maddie.  Everyone else kept on going and finished the course with Jerry (our cousin’s husband who has had a kidney transplant).  Maddie was really hoping to be able to do the entire walk, but she has to pace herself.  2 miles this year, maybe the entire thing next year!  The last thing we wanted was to push it too hard during the walk and end up in a relapse.Here comes everyone else at the finish line!
You might have noticed in the pictures the changing of stroller pushers along the way.  It was quite fun :)
Maddie and Ripples the Kidney Awareness Kat after the walk.

Thank you everyone who supported the walk monetarily and with encouragement! Maddie’s team raised $770!! We can’t wait to see what we can do next year.