Finding Strength

Let me be blunt.

This week has been HARD.

I say this not to get a woe is me. But to just be honest about the struggles we face in our house. I feel like all week I have been on the constant verge of tears. I'm holding on by the tiniest wisp of a thread.

Why? 

Well. Maddie.

Last week at this time, we were at Disney World with the band. It was touch and go up until we left on Thursday morning if we would be able to go as Maddie had been really sick.  But with lots of meds and a couple trips to doctors leading up to the trip. We went.

We rented a scooter for Maddie and she rode her chair all around the parks. It was exactly what we needed as Maddie couldn't even walk around the resort without help.  We even did breathing treatments before and after the plane rides in the airport with her sitting in a wheelchair. Yes, she was that sick. And yes, I know we took a big risk letting her go on the trip, but quality of life is important too. And being able to go on a trip with her peers was one of those once-in-a-lifetime trips!

Doug and I went along as well as Maddie's support team.

It was a lot of fun.

But this was the price.

We got home from Disney on Sunday night and Maddie went to school on Monday. She had missed a number of days prior to the trip and then one school day for the trip, so she was really behind and knew that she couldn't miss another day.  As she struggled to make it through the day, she came to the realization that there was no way she would be able to try out for the leadership team for her colorguard group next year. She was just too weak to practice the routine that she had created and been practicing for months. That was hard.

Tuesday she went to school even weaker than she was Monday. And then the shakes started. Her poor left hand and arm just shook. And not like tremors. These shakes were jerky spasms. Convulsions. By 6pm she was not good.

So I took her to the ER. They immediately took her back and got her hooked up to monitors. Her heart rate was jumping from 60 to 300 then down to 150 and up to 240 and so forth. It was very scary. And it lasted for a couple of hours! It took the combination of a big dose of steriods, a very potent breathing treatment and a dose of Benadryl to get her body to slow down.

The doctor we had was absolutely the most compassionate ER doctor we have ever had.  (And we have seen a few..) Maybe the most compassionate doctor Maddie has ever seen. She was exactly the doctor we needed. Thank you Dr. Brister. 

After running a number of tests and such, the doctor just sat down next to Maddie's bed and smiled at her and patted her hand and said, "when you get sick, your entire body just gets really sick." I realize that doesn't mean much to most people, but given how many times we hear, "all the tests look good" and "your symptoms don't match what we know about ______" it was nice to just have Maddie's place in life validated. No judgement. No aside comments to me. Just validation to Maddie that she is sick and Maddie is not responsible, nor can she control her body's response to illness.

Later, after making sure that Maddie felt okay, we went home. With no answers.

The next day (Wednesday) was Maddie's 16th birthday.

She spent it in bed. Alone. 

In the afternoon she felt well enough to sit on the back porch for dinner.  

Thursday she was back in bed.

Friday I took her to the specialist in Dallas to have a "challenge test" with the antibiotic she had been on. Because she is so highly allergic to other antibiotics, we had to make sure that she wasn't allergic to this medicine as she felt like this drug was what caused Tuesday's problems. 

Well, she's not allergic to the drug. But the drug can cause the side effects that sent her to the ER.. of course these are very rarely occurring side effects, but that is Maddie's world.

Today is Saturday and she hasn't been on the drug since Tuesday. She's feeling better. The infection in her body is still there, but too bad until at least tomorrow.

Cause tonight is PROM. And she is going. And she is going to be able to enjoy it. I am DETERMINED!

Monday she is back to Dallas to see the cardiologist as this latest tacychardia episode is the second in two weeks.

And in the midst of all of this? 

Lexi and Kylie participated in the colorguard minicamp that Maddie wasn't able to go to. They performed on Thursday evening and were adorable! Maddie sat in the bleachers while her friends led the campers. 

Then, Lexi had field day on Friday and her two individual races. And I wasn't there.

Today I'm doing 20 loads of laundry and I need to clean house.

Here is a snapshot of what my entire house looks like.

Yeah. Ugh.

But the dishes and the dirt can stay. Cause today my sweet 16 is going to feel like a princess and that is worth more than a clean house any day. 

And in a life defined by struggles, pain and illness, today is PROM and she will find strength for it. And so will I.

The no-wheat, no-dairy, no-egg, no-legume, no-nightshade, no-honey, no-coconut, no-beef, no-turkey diet

So how are we doing on the new extremely restricted diet? Okay. Still learning! All of us are trying new foods and adjusting our lifestyle.

Maddie is feeling better! YAY! She has detoxed and her body is adjusting. She has lost a few pounds that she didn't need to lose, but she isn't hurting as badly and that is the most important part of the equation.

Here we are on Easter morning.

We have a tradition at our church of eating breakfast together on Easter morning. Yeah. Well, that was a little tough for Maddie, but I bought her some "waffles" and she ate those. Yes, I put quotes around it, because it's hard to describe any baked good/pastry as such when it doesn't include any wheat, egg, dairy, soy, or potato in any form!

Through all of this Doug has been expanding his culinary skills. Who would have thought a few years ago when he took an interest in cooking that now it would be so important! And I'm learning to bake without the traditional baking ingredients.

Some things haven't been that great. But we are learning. Like who knew that ground flax meal could replace an egg!! Weird.

Here are some pictures of the meals.

I LOVED the spagehetti squash with no-tomato marinara sauce!

Here are my banana muffins. (they were okay..)

And my pancakes. They were pretty good. I've got to get a sifter. No-wheat "flour" is sticky and really needs to be sifted!

And this is what the inside of my fridge looks like. Thankfully we started eating way healthier a couple of years ago and then I went with the Eat to Live lifestyle last year, so we had been transitioning.. just not the girls.  Now we are all transitioning. like.it.or.not.

I'm hoping that these nutritional changes might make things easier and better for Maddie. I've been gathering stuff for taxes and when you see our life in the form of medical bills. oh.my. Maddie had 37 doctor/medical tests/therapy visits last year in addition to the run of the mill stuff like dental visits and such. And she is a full-time honor roll student who is very involved in extra-curricular activities. I can't imagine what she could accomplish if she was well!

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.

Help me find a 16th birthday trip from my chronically ill daughter

We've been talking about it for at least ten years. We promised our first born a 16th birthday trip to anywhere she wanted to go. We've been dreaming about it, planning and looking at travel books.

Along the way there have been moments of doubt. Like how are we going to pay for a trip like this? But we have been saving some and doing lots of research. Cause that's just the way we are.

But now as I start really putting dates on the calendar for June 2016 and we are trying to decide if it's going to be London, Paris, Vienna, or Munich the reality hits.

How do we take our chronically ill daughter on a trip like this?

But how do we not? How can I look in my daughter's eyes and tell her that we can't go. Do you know how many times I've said this in her life? 

This is NOT going to be another disappointment.

And here is why.

On the day Maddie was born, Doug bought her first doll. We didn't know if we were having a boy or a girl, so everything we had was gender neutral. After she was born, he went out and bought a couple of outfits and her very first Madeline doll. It was perfect choice for our redhead!

Then we took Maddie home. 

And things got hard. 

As first time parents we had no idea that other babies didn't act like Maddie. oh my. It was really hard and I got very, very little sleep. But we managed. Cause that's what you do. There was a lot of walking around our very small house and she about lived in the sling. She was happy there!

At four months old she got her first ear infection and had her first asthma attack. (I kind of make it a joke, but anytime we see a new specialist and they ask when symptoms started I say that she was good till an ear infection at 4 months old and has been sick ever since.)

At five months she had her first major allergic reaction to an antibiotic, got her first nebulizer and started routine meds.

At six months she started a cycle of emergency room visits on holidays and doctor visits at least once a month.

Since that time she has seen a truck load of specialists, had a handful of surgeries and experienced five different children's hospitals in the state of Texas.

And during all of this time, we have read books and watched a lot of movies. 

There have been many favorites, but Madeline was always on the playlist and reading list!

Can you guess why? :)

So when Maddie was about six we started talking about going to Paris for her 16th birthday. For a time Maddie even worked at learning French.

Then she got sick. It's weird when I'm typing this that prior to her "getting sick" right after her 7th birthday, her regular sick that included twenty doctor visits or more a year wasn't "sick." 

Perspective I guess. 

The picture below is less than two months before she "got sick." But even here Doug had to take the day off and take her in our car in order for her to go on the school field trip. She wasn't strong enough to ride the bus and then walk around the zoo and ride the bus home. 

Anyway, the summer of 2007 our life changed. Decisions that seemed simple, like do we go to the ballgame or not were now major decisions. Maddie spent the summer in bed. 

For the next year or so Maddie saw specialist after specialist and had test after test done. Scary really strange and big word diagnoses were thrown around and discussed and eventually tossed aside. We finally after many doctor visits and even more hidden tears found a great set of doctors and had a partial diagnosis.

IgA Nephropathy (autoimmune kidney disease), a compromised immune system, asthma, significant allergies and chronic pain.

This was a lot for a kid to endure. 

But Maddie has always amazed us. She lives with such grace. And acceptance.

Things that other kids did, she couldn't do. Or if she did, she would pay the price for it with exhaustion, pain and sickness. What nine year old makes a new year's resolution to get strong enough to be able to go back to PE class?

Maddie did.

And what is so tough is that she looks "so good." So normal. Yes, I am incredibly thankful that she is beautiful and looks just like everyone else. But do you know what that means? No one knows her struggle. No one hears her pain. No one sees...

And so over the years, we have learned to manage. Maddie works tirelessly to keep up with her peers. In order to gain enough strength and flexibility to participate in colorguard, she spends her off seasons in physical therapy.  In order stay as healthy as as can she goes to bed early and doesn't do many teenager things.

Every single day is a struggle. 

Every single day is a day on the roller coaster and you never know when the next drop is going to start. It's the life of remission and relapse.

In the midst of all of this, we have always talked about her 16th birthday trip. When her peers went to Washington DC for the 8th grade trip.. and she didn't. We talked about Paris.

When her peers went on ski trips and boating trips.. and she didn't... we talked about London.

When her peers went on camping trips and church camp and.... on and on.. and she didn't. We talked about what we would do for her 16th birthday.

Even now, as the band is raising money for a huge trip to Disney the week before her 16th birthday.. she realizes that she can't go. If any place could have made it work, it would have been Disney, but the agenda is just too hurried for her. She knows that she can't handle the schedule.

So what should I do?

copyright Kimmie's Photography 2015

Anyone out there with some ideas?

We've looked at Adventures by Disney. But how can I spend so much money on a trip when I know that Maddie won't be able to keep up, she won't be able to do half the activities and if we push hard she will end up sick?

We've looked at so many options. But nothing is geared to chronically ill teenagers. 

Help. 

I need an international trip that provides an opportunity for Maddie to experience a world class symphony or similar type of event. But I need it to come with few lines and a lot of flexibility and access to doctors.

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.

Whew, there is something about that first full week of May

There is just something about the first full week of May each year. It's like the turn of the calendar makes everything go into warp speed.

I am trying to slow down my brain and enjoy the moments as I can.

The week started out with Maddie celebrating her 15th birthday. Like every mother, I just shook my head and wondered where these years have gone!

I continued my daily handstand challenge, and even mastered the handstand in the yard without a wall to lean on! I was so pumped.

Also this week Maddie had colorguard tryouts for next year's guard. It wasn't nerve wrecking this time as we knew what to expect, and we knew that as long as she didn't just do horribly, she would make the team.

She did, along with her best friend! 

Friday night found Doug and I out to eat with just Kylie. We haven't had many meals out with just the little one, but I have a feeling that this is a glimpse of our future.

I found it nostalgic.. Kylie loved having all of our attention.

And we finished the week with Mother's Day today. Here we are at church. 

And then we came home and Kylie did handstands with me!

 Life is busy, but oh so good.

Changing the way I respond

I rejoined Weight Watchers yesterday. I did pretty well. I worked out, ate healthy foods and played with my little girls. I used all of my daily allowance, 1 weekly point and banked my exercise points.

Good thing!

This morning Maddie, at almost 15 years old, had tubes put in her ears. For the first time. Crazy stuff. We left the house at 4:45am in order to be at the hospital at 6am for check in.

before being called back to pre-op. it was EARLY!

Then we waited and the nurses did paperwork and we waited and finally at 8am they took her back to surgery.

We were at Ihop (Maddie's choice) at 9:30am.

It is possible to make healthy food choices at Ihop. I didn't.

Something about my kid being put under general anesthesia for at least the 9th time in her 14 years made me regress to my crappy food choices.

I was completely aware that I was doing it.. but I did it anyway.

I ordered the Swedish crepes.

I enjoyed the first one. I ate the second one. I stopped one bite in on the third one.

That was 12 Weight Watcher points. Ouch.

At least I only ate 1/2 of the order!! oh. my.

We got home and got Maddie to bed and I sewed some "bum warmers" (a fleece wrap thing you tie around your waist..) for cold weather running. I felt better.

I realize that so many of my eating choices over the last 14 years have been in response to Maddie's health. It's very easy to say "the heck with it, I want french fries or donuts.. I deserve it.. don't you know about my child's struggle." My response has to change. For the most part, it has changed.

This year I am committing myself to making better food choices 80% of the day.

I am looking forward to hitting my goal weight with Weight Watchers. There is just something about those points and that accountability that I need. My extreme, you have to be kidding me goal is 20 pounds. My realistic finish this journey off well goal is 12 pounds.

I'll keep you posted.

Ear Tubes for a Teenager?

Maddie has a busted eardrum. Again. Third time in 3 months!


Just a little frustrating.




She has missed 14 of the 58 school days so far this year.


A couple of months ago, she saw the ENT and we discussed putting in tubes. But with Maddie's immune system and health history, the doctor was concerned about having to do a follow up surgery later to repair the ear. And what if she is allergic to the tubes?




I've never heard of a 14 year old getting tubes in ears. Have you? What is crazy is that as a baby/toddler, Maddie had what seemed like every other respiratory issue, but she never had ear infections. Now as a teenager, she has recurrent ear infections.


I've started googling recurrent ear infections and treatments and such. I would say that by now I know better, but really, I've just become better at sifting through crap articles. 


So I have a few ideas for the doctor. (They love me..)


In the meantime, we have to get Maddie well. And that's hard enough.  Let me take you through getting meds...


Maddie went to the doctor Wednesday afternoon. Remember, Maddie is allergic to a lot of antibiotics... so in order to get her strong enough meds, the doctor prescribed a drug that not many people get.


Our beloved pharmacist at Walgreens called. They didn't have the drug in stock. He could order it for us and we would have it at 10am Thursday or he would call other pharmacies around town and send us to where they had it. Since I really wanted to get a dose in Maddie that night, he did found some at CVS.


I picked up the meds Wednesday evening. The pharmacist and I had a nice discussion about all of Maddie's allergies to meds and red dye #40. We got home, Maddie opened the bottle and looked in to see CORAL RED pills.


I called the pharmacist. She is very sorry. She put me on hold, does some research, comes back on the phone a little panicked. OMG the pills are RED 40... PLEASE DON'T TOUCH THEM.. She then puts me back on hold... comes back and says she can order the prescription from a different manufacturer and it will be yellow. It will be available after 3pm.


Great.


So Thursday afternoon, in the middle of a crazy busy afternoon, I go pick up the new replacement meds and return the unusable meds. The new meds are the same as the old meds. Corporate didn't like the new med choice and CHANGED the order.. so now we have two bottles of RED pills and NO antibiotic that Maddie can take.


The tech apologizes. She says that I can call around and ask other pharmacies in town and see if they have it. I nicely, but I'm sure very frustratedly said that pharmacies don't talk to parents like they talk to other pharmacies and that I didn't even have the prescription!  She said she would call.. but that in the meantime, she could reorder the correct meds and call corporate and explain the allergy.  I said okay, that I didn't really have much of a choice did I. About an hour later, the tech calls. No one in town has the correct medication. We can come by at 2pm on Friday to get the meds.


Great.


I knew I should have stuck with Vince and Kaci at Walgreens.


At best, Maddie is going to have one dose of antibiotic in her before being outside for five plus hours in below freezing weather with a busted eardrum at a football playoff game.


Great.

Support Signs for Marching Band

Maddie is in color guard. That means that she is part of the marching band and that means that I have support signs to make!! I'm having a ton of fun!!

Last week was region contest. Here are the signs I made.

We put the signs out before the band had to report Saturday morning.

And then when the band was leaving town, we had a send off. I quickly moved the signs, got the girls and our cans and set up with the other band families!

(Kylie does have shorts on.. really.)

.

And here we are cheering the band on! It was soooooo hot! Doug was there.. just not pictured.

We were so excited that the band advanced to Area competition!

So I made more signs for this week...

I'm hoping to have more to add next week...

Go Yellowjacket Band and Colorguard!!

All the way to state!

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.

Oh life, how good, but how busy you are.

Whew. We are so very busy that I can't catch my breath much less blog!

This week was crazy, plus more! Our beloved Yellow Jacket football team played on Thursday night instead of the normal Friday so that they could be broadcast LIVE on ESPN2! It made for a truly crazy week and a long, long week.

But here is a recap.

Kylie loves school, soccer and playing. Her imagination knows no bounds. Here she is figuring out tricks on Lexi's skateboard.

Lexi loves to read and is the top reader in 4th grade at this point in the year with close to 10x the AR points of most of her peers!

She also is playing volleyball and really improving. I'm her coach. Her improvement is despite my coaching.

This past weekend she went to church camp for the first time. She LOVED it! 

Maddie is tearing it up on the football field as a colorguard member. This is HER THING! How fun to watch her excels at something physical.

Maddie is also doing great in school.  She is seeing a new specialist in a couple of weeks and we are hoping that will help one of her ongoing health battles, but overall, she is doing better than we could ever have imagined at this point in high school!

I've tried to post her performance from Friday night. If you click on the link, it might take you to the video...Post by Emily Maxwell McLemore.

And what have Doug and I been doing besides driving children from place to place? Well, we have been considering a lot about life. We are in that midpoint of our lives and have to ask ourselves if we are the people that we want to be. Are we the people we have been called to be? Are we doing what we are meant to do? Lots of questions. For me, this means going back to school. I'm going to work on getting an additional advanced degree in Education. No, I have absolutely no clue how this is going to fit in our lives. But I do know that I was created to teach others how to teach and at this point in my life I'm not doing that. So I'm going to work on that. 

And what about running? Well, I'm feeling great and so strong these days. Not fast, but my running and fitness base is solid. And sadly, there is no time to race. We have commitments every Saturday from now to Christmas and beyond. So I'm looking for a fall 1/2 marathon on a Sunday that's not too far of a drive! I'll keep you posted cause man am I feeling great!

That's all I have time for.  Hope to post again soon!