Pretty Princess!

Dear Friends!
    My mommy is making herself do a better job of updating my blog! Last Saturday, I was in a beauty pageant. It was a pageant just for kids with special needs just like me. I had so much fun & of course...looked gorgeous! I was also on tv!If you want to see me on the news, click on this link!    http://nwahomepage.com/fulltext?nxd_id=378772

My mommy is also updating my bucket list! I am crossing lots of things of my list!

Me, mommy, & daddy right after the pageant!

Me & daddy



Me & my poppa

Me, my poppa, &  my nana!

Me & my mommy.

GO TEAM KENADEE!!

I got my hair & makeup/ hair done. As you can see, I wasn't too excited about the hair part.

Sleepy Princess!

                                           My Bucket List...

Ride in a convertible and feel the wind in my hair

Blow bubbles with mommy and daddy

Get a tattoo
See my daddy fish with KVD..he watches him all day on t.v. while he's home with me

Go to an aquarium

Go to the zoo & feed the animals

Play with Playdoh

Go bowling

Eat ice cream

Go to the movies in my pajamas

Get a mani-pedi

Sit by the pool and read trash magazines

Attend a birthday party

Go on a boat

Paint a picture for mommy & daddy

Feel the sand in my toes

Get a massage

Have as many birthday parties as people want to have with me

Play Hide & Seek

Lose my first tooth and get a present from the tooth fairy

Have a tea party

Sleep with mommy & daddy because there is a boogyman in my closet

Build a sandcastle

Go down a slide

Be a flower girl in a wedding

Ride in a Ferris wheel

Play in a sports game
Go to a sporting event

Ride a horse

Teach the world about Mito disease

Help find a cure so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life

Be on TV

Be on the Ellen Show - maybe she can help spread the word
Meet Oprah or Ellen - maybe they can help spread the word

Have 1,000 followers on my blog

Have a song recorded that was written about me

Learn to write my name

Date night with daddy

Date night with mommy

Overcome my illness
Get a package in the mail from a friend

Meet a celebrity

Listen to the ocean

See a dolphin

Make a snow-angel

Catch snowflakes on my tongue

Have a first crush

Have a first kiss

Write my name is wet cement

Have a man get me flowers

Blow an eyelash & make a wish

Meet my aunt Sara and uncle Chris’ baby

Put a smile on a stranger’s face and a thought in their mind

Play in the rain

Get my first haircut & style

Go to Disney World

Become a Girl Scout

Make a wish on a dandelion

Hold a kitten, name a kitten, listen to a kitten’s purr

Go to the Macy’s Thanksgiving parade

Listen to a wind chime

Kiss someone on New Years

Pet a real, live bunny

Meet Jennifer Nettles (my mommy loves her ;)

It has been forever!

It has been too long since my mommy last posted! Life has been kinda crazy lately. I spent almost two weeks in & out of the hospital in August. That was no fun. My doctors first thought I had pneumonia. They later learned that I had fluid in/on my lungs that just wasn't going away. My heart isn't able to get rid of the fluid that my body needs to get rid of. My mommy & daddy took me to my specialist who told them that I have 3-6 months left on this earth. My mommy and daddy aren't believing that and are not giving up hope! If there is one thing that is always for sure...it's that there is always HOPE. God can work miracles; I know that because he created me.

I am in hospice and am now taking special medicines to help me get rid of the fluid. Since, I've been out of the hospital, I've been doing great. I have a machine that keeps track of my heart and oxygen levels. It makes mommy & daddy feel better because they know if there is something wrong at night. I hate that machine because it beeps a lot!

My daddy is working a lot at night & I miss him when he's gone. He's thinking about working part time soon to help mommy with me. The winter months are the hardest on my respiratory system. I know that I have tons of prayers going up for me everyday & I couldn't be more thankful! You're never going to guess what I get to do in a couple of weeks---- I get to be in a beauty paegant! My mommy is so excited...daddy too but he's a guy and girls just get more excited about that kind of stuff.

I hope that you continue to share my story with friends & family. My goal is to raise awareness about mitochondrial disorder and how it hurts families. I wish I had more followers!

Thanks Friends--xoxoxoxo,

Kenadee Rachelle

Hair cut & gift from Minnie Mouse!

Whew! It's been a while since my mommy posted in the blog! We have been so busy this summer. Guess what--I got my hair cut! My mommy's friend-since-high-school, Jon, took very special care of me. 

Minnie Mouse heard about me and my story! She sent me a package in the mail to let me know she was thinking about me. How cool is that--Minnie is so sweet! Here is a picture of what I got !

 

Photo Book

Click here to view this photo book larger

The new way to make a photo album: photo books by Shutterfly.

MommY, Daddy, & tattoos!

This is my mommy & daddy. They were so thankful that they were able to take me to the ocean! 

Things marked off my list in Florida!
Get a tattoo

Go to an aquarium

Eat ice cream

 Sleep with mommy & daddy because there is a boogyman in my closet

 Listen to the ocean

See a dolphin

While we were in Florida, they got to parasail! They said it was so much fun! Daddy took a video of the entire thing but we'll post that later, once we figure out how! The tried three different times before the weather cooperated and it wasn't too windy. 800 feet in the air is crazy-high!

I had "getting a tattoo" on my bucket list. My mommy wants a real one, but she's a big chicken so we got the fake kind! We love dolphins so this worked perfectly! Papa texted mommy to make sure they weren't real--silly poppa!

Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

 

FudPucKeRs & Alligators

We went to Fudpuckers. It's a really fun restaurant in Destin. We got to hold a real alligator! We also got to write our name on anything we wanted to! Mommy wrote our name on an upside down metal bucket. I think that was pretty cool! I fell asleep though ;(. The manager was very nice to us and helped us get around. It's kinda hard at some places because of my wheelchair. While we were there, something weird happened to mommy. While we were eating, a very pretty lady and her family were also eating in the outdoor part of Fudpuckers. There was glass that separated her from us but she could still see me ;). She looked at me, then at mommy, and had tears in her eyes. My mommy was confused at first..she then read the pretty ladies lips as she said.."I'm so sorry, & she's so beautiful." My mommy didn't know what to say but was reminded what others may see when they see me. They may be sad because I am in a wheel chair or I have an oxygen tube. Mommy & daddy aren't sad about that, they are just happy when I'm healthy and able to be out & about. Mommy thought a lot about that pretty lady for the rest of that night. I definetly leave marks on people's hearts when they see me.

 

Things marked off my list in Florida!

Get a tattoo

Go to an aquarium

Eat ice cream

 Sleep with mommy & daddy because there is a boogyman in my closet

 Listen to the ocean

See a dolphin

 Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

Destin pt. 3...I got in the ocean!

 

Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

Daddy to me into the ocean. I was scared at first, but then I got used to it! I like to relax, and listen to the ocean but the pool is my favorite ;)! The ocean is kinda scary. I think I'd rather relax in my beach chair!

Things marked off my list in Florida!

Get a tattoo

Go to an aquarium

Eat ice cream

 Sleep with mommy & daddy because there is a boogyman in my closet

                          Listen to the ocean

See a dolphin

Destin Part 2...The aquarium!

 

We went to the Gulfarium Aquarium! It as amazing! We saw a dolphin show, had our pictures taken with a sea lion, & saw lots of really cool sea animals. Nana & mommy got to feed seals!

Things marked off my list in Florida!

Get a tattoo

Go to an aquarium

Eat ice cream

 Sleep with mommy & daddy because there is a boogyman in my closet

                                                                     Listen to the ocean

See a dolphin

Do you see the dolphins swimming in this picture!?

                                           

 

Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

Destin part 1

Each time I post an update, please share Kenadee's story by updating your social networks, talking to friends & coworkers. Let's get the word out about Mitochondrial disease! Let's help find a cure so that no more mommies, daddies, & Kenadees have to be affected!

We had SO much fun at the beach! Boy, oh boy, I marked lots of things off my bucket list! Look at my list!

Get a tattoo

Go to an aquarium

Eat ice cream

 Sleep with mommy & daddy because there is a boogyman in my closet

                                                                     Listen to the ocean

See a dolphin

 We got to Destin on Saturday! When we first got there, we went to eat at Pampano Joes on the beach! Here are some pics of my first night in Destin!

I was hot already--little did I know that shortly after we returned to our condo, all of the electricity in Destin went out. Daddy & nanna had went to get groceries..mommy & I stayed behind and we got hot! Luckily, the electricity came back on about midnight ;).

Happy Mother's Day!

Omg! You will not even believe the things I get to mark off my bucket list just this week! I got a package in the mail, feel asleep during a massage, went down a slide, & got to swing at the park! Mommy's computer died so she's blogging from her phone so..sorry if the pics aren't pretty! Look, look, look....

Take me out to the ball game....

 

Today, I was excited & hot ;)! Mommy & daddy took me to a Natural's game. It was my very first sporting event and I even got to go on the field! It was so cool! The grass on the field is so soft ;). A pitch was thrown and I got to be on the field when he threw it. I am like the coolest 2 year old in the world..at least my mommy and daddy think so! Mommy was excited because it just so happened to be "bark in the park day." This means she was on the look out for a sheepdog and she found one! Silly mommy and those stinkin' sheepdogs ;). Daddy was excited because he loves sports and the outdoors. Daddy also got to walk me through the water-spray thingie. That was really cool! 

Things marked off my bucket list:

*go to a sporting event

*play in a sporting event..kinda ;)

Genetics part 2

We had our appointment with Dr. Schafer, the geneticist from ACH last week. At this point, Kenadee has had every possible test done. We know she has Mitochondrial disease but we don't know why. Testing that was done on Dennis and I showed that the 2 broken genes that Kenadee has, Dennis also has. Because Dennis doesn't have any of the characteristics that Kenadee has, this means this is not the issue. Basically, what Kenadee and Dennis share is the same as a baby having the same smile as their dad...just basic similarities that kids and their parents share. The next step is to do a test in Kenadee that tests 23,000 of her genes. This will tell us, hopefully, if Kenadee's disease came from us or was a freak thing. The new test costs $7,000 and we are hoping her insurance will cover it. Her drs say it's a paperwork process and it takes about 6 months....fingers crossed!

I want you to know...

i want you to know...

sometimes i turn the sounds you make into sentences in my head,

on days when i am mad at the world, you are exempt ;),

you are the most beautiful person I've ever seen or known,

when i take a deep breath, and you do too, it makes me smile,

i beat myself up for being sad because that's a moment that's lost with you,

the big, fat, cat, Inca..thinks she is your bodyguard,

my strength in life comes from you,

you look so pretty in bright colors,

i hate mitochondrial disease,

i want you to know that i am blessed to be your mommy & that is all

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
2 Corinthians 1:3-4

 

 

              hope4kenadee

Spring Break=Rain!!

It's been a while since I posted! Kenadee, Dennis, & I are doing great! My grandma let us use her timeshare so we have been in Branson for spring break!! It was so nice for us to get out the house....especially for Dennis because he spends most of his days inside the house with Kenadee. We've walked around a lot & had Kenadee out tons which makes me nervous but all
is good so far!

I thought it would be a good idea to go to a timeshare "presentation" so we could get free tickets to Dixie Stampede and the Six show...we listened to a salesperson for 3 hours!! Good news was it was raining, so there wasn't lots we could do otherwise & we got free tickets!!

We're getting used to traveling with the oxygen tanks etc...its a pain bc one tank lasts between 1-2 hours. On the flip side, the oxygen is helping K so much! This week is her fundraiser at school & we feel SOOO lucky to have an outpouring of people who want to help us make our wish come true. We are stinkin' lucky in so many ways.

XOXO

Special thanks to my house-sitter, Anna, this week!!

Woo-Hoo!

I am so behind blogging! Things are going great...K is staying healthy & Circle of Life Hospice are a saving grace. Kenadee's fundraiser went great on Thursday night!! I'll update with total amounts raised next week. So, I've never been a person without words, ever. Lately, I am speechless a lot. I'm so lucky to have friends, nurses, doctors, counselors, & family that love Kenadee just as much as Dennis and I do!

The road that we are on has been tough, but we are so lucky..lucky beyond words that I can even express.

I also feel like when something is "easy," it's suppose to be. For example, getting Kenadee to the beach has been simple..not hard, not stressful...it's almost like people need something good in their lives..like all we hear about is bad things, bad people, and bad choices. Kenadee is the opposite...pure, angelic, innocent. Kenadee lifts the spirit, reminds us to slow down, not take things for granted, to love because we want to-not because we get something in return. Kenadee is love and love is Kenadee!!

Hope4kenadee...