Wannabe Earth Mamas

Charlotte's First Formal Dance

2011-04-09T19:29:00.002-05:00

Our homeschooling group puts on a formal dance each Spring that is similar to Prom. The kids can start going at 13 years old. Char found her dress at S.avers a local thrift store. She used her shoes from her dad's wedding. She borrowed her bracelet and broach from her Grandma Belinda. Her necklace, earrings, and hair pins are all new and thanks to Gramme. She really achieved every single thing she wanted. She was so proud to have found her beautiful dress at a thrift store since she is such a thrift store junky. She feels beautiful. Jess got her ready for the big night and her dad accompanied her to the dance.

Rock Climbing

2011-04-05T13:46:00.002-05:00

I don't ever post on here anymore. I need to get better. I am going to try to post pictures once a week of what we've been up to.

Today the girls went to their first rock climbing class. A homeschool dad offered the class at a discounted rate since most kids are in school at this time it's just added income for the gym.

First Homeschool Park Day

2011-02-17T16:01:00.002-06:00

Today was such a beautiful day! 75 degrees. Luckily we were able to enjoy it with fellow homeschoolers.

Let's play catch up

2011-02-15T14:56:00.005-06:00

Jess is still working...a lot lol.

I am still at home...schooling, cooking, taxi driving the kids around, etc

Charlotte will be 14 soon, GULP! In school Charlotte has completed Earth and Space Science, 8th grade vocabulary, 8th grade grammar, and 8th grade history. She has only missed 1 math problem in the last 14 math assignments in her Algebra 1. She is currently studying African American History, Astronomy, When the cage bird sings, Algebra 1, and piano. She is going to take Japanese through Co-op this term. They are going to learn about the theme of clothes from the kimono to the avant garde styles of today. They will learn to speak Japanese through their lessons on clothes. She also auditioned for the Team Shakespeare and Heartland of American Shakespeare Festival plays. She should find out next week if she got cast in one or both. She feels like she did really well. She said that she's gained so much confidence over the past year that she's "certain she nailed it". If she gets in the HoA play it will give her professional credit. Charlotte is also helping out on Monday afternoons across the street at the elementary school. She is assisting the art teacher during his hour of kindergardeners. She LOVES it and it's inspired her to look more into becoming an elementary art teacher. She is also about to start a saturday class offered by our parks and rec department about American History the 20s & 30s.
Julia turned 9 and boy has she grown up all of a sudden. Such a "big kid" now...not our "little kid" anymore. In school Julia has completed 3rd grade history, 3rd grade vocabulary, 3rd grade Earth and Space Science, and 3rd grade grammar. She is still working hard at her spelling, 3rd grade math, and piano. She is reading The Voice on the Radio. Julia will be taking mythology during Co-op this term. They will learn about all the major figures in mythology and by the end will create their own Trojan Horse. It should be a lot of fun. Julia is going to brush up on some swimming skills this March and is hoping to try out for a local swim team in June. This will be a huge time commitment for her (practice five days a week) but she is super excited about the opportunity. She is very ready for the weather to get warmer so she can spend more time in trees and dirt. She is becoming quite the artist. Honing her skills. She also continues to work on her building skills. I believe she and two friends are starting a book club as well. We will have to make sure the friendship of these three little smarty pants lasts a long long time.
Delaney turned 2. Holy cow my baby is a full fledged toddler. She is a ball of attitude. She is still proving to be quite the medical complexity but she sure keeps life interesting. She is still speaking gibberish but we think we have decoded some of it to mean actual words. She loves loves music. She is newly interested in dancing with one of us while we hold her. She can still sit for a long while and look at books. She is in therapy three to four times a week. She continues to struggle with her immune system which limits where we can go. She loves her tryke that she got for Christmas. It's got a five point harness and foot pegs that she can use because she can't pedal. It also has a steering handle for us to push and steer her. She is trying to potty on the potty but gets very very disappointed in herself when she has an accident. She also gets very upset with herself if she gets her clothes dirty at all. We are working on her trying to accept the dirt lol.

Charlotte's Poem about Maya Angelou

2011-01-23T16:58:00.002-06:00

Yesterday we watched Oprah's Allstars about Maya Angelou. The girls joined us and I think we all learned a whole lot. Charlotte has always felt connected to her poetry. Over a year ago she put Phenomenal Woman into a song. Today she shared with us a poem she had written for Ms. Angelou.

Her Words: A Poem About Maya Angelou
by Charlotte

She speaks her words
And the whole world stops
Just to listen
Her words are powerful
All people
Whether black or white
Male or female
Gay or straight
Conservative or libral
Listen to her words
They may not like
The color of her skin
But they love her words
She can sing her words
With the gentle coo
Of a dove
Or speak her words
With the ferocity
And low growl
Of a tiger
She speaks her words
And the world changes
Her words are
Powerful
Her words are
Beautiful
Her words are
Angelou

Team Delaney Shirts

2011-01-21T12:43:00.003-06:00

Our very dear friends T and K are going to be the official Team Delaney printers. We are using tshirts as a way to show support during Team D events and as a way to raise money. Please consider purchasing Team Delaney shirts. We are offering toddler sizes through 3x.

You can find info on Team Delaney at "TEAM DELANEY" on facebook or by going to www.carepages.com/carepages/delaneylower

Shirts are $15. XXL and XXXL are $20. We are taking orders now and orders will end at the end of March. Shirts will ship in April.

Please consider purchasing a shirt for our girl!

Perspective

2011-01-06T17:54:00.006-06:00

In life we all have a journey to take. We all have a purpose. Lessons to teach and lessons to learn.

From as early as I can remember I dreamed of being a mom. I wanted to be pregnant. I wanted to snuggle a bitty baby. I wanted to lay on the floor with my infant staring at the fan. I wanted to record the first steps. I wanted to witness first words. I wanted to play and listen to my toddler. I hoped to teach my older kids outside the traditional classroom. I wanted to show them the world. I wanted to help my baby get ready for their first day of school and college. Their wedding. Be a grandma.

I married into two beautiful girls. One approaching puberty and one still such a little girl. My heart swelled with love for them. I would give them a kidney. I ache when they ache. I am vested in their future. I am present in their future And I have learned almost every story of the past. I fell in to being a mom and how rewarding the challenge has been.

Then Jess and I started trying to have a child together. I lost our first pregnancy. And then came TWINS! My dreams came true with that one ultrasound. Unfortunately we lost one of the twins early. But Delaney held on. She was strong. My pregnancy was hard and scary at times. Finally Delaney came into the world. Wow was she perfect. Yes she was born via csection. Yes her feet her horribly turned in. Yes she had bad jaundice. Yes she had tongue tie. But this kid was perfect. I got to snuggle my bitty baby. Lots! we returned back to the hospital at 28 days. It was devastating and scary but that experience changed me as a mom. I learned to trust my gut despite what anyone says. Then next 7 months I got to play on the floor with my infant. We had fun trying on clothes, finding interesting things to take her picture in(soup pot, purse, etc), and taking walks. During this time I learned to push for answers and enjoy the little moments.

By months 10 and 11 we learned to pray for guidance with our whole hearts. We learned when to say no and when to ask for better answers. We learned to celebrate milestones in a different way.

By one year we had learn to accept that some milestones might not happen. We did however catch her first steps on video. They were during physical therapy the day she got her first braces. We could not have been more excited if They were in our living room on a Sunday afternoon.

She taught me to celebrate and fight like hell for breastfeeding.

She taught us to re-evaluate our idea of feeding and meal times. She taught us to slow down and rest. Often. She taught us to travel for the truth. She taught that even in silence countless things are said. She taught us how to pray with every cell in our body. She taught Julia how to be a big sister with protective instincts. She taught Charlotte how to find her female instincts she taught us all a whole new medical language. She taught us to smile through pain. To accept challenges as life and move on. She taught us how to cry and scream and laugh and smile. She taught us to look at our own mortality as well as hers. She taught us that there is great strength is weakness. She taught us how to give back even when we are tired or broke or sad or busy.

She taught us how to become an unbreakable family of God. Us 5 females are pretty powerful with our tiny leader.

We are saying goodnight to day 9 in the hospital. We are saying goodnight to a very bad day for Delaney.

The picture at the top is from today. It was a brief 5 minutes today that Delaney giggled and played through the exhausting pain and nausea and energy crisis and breathing struggles. THIS is our girl. She's such a fighter.

Too many of our friends are currently facing what we are. Too many are learning the lessons we are. Too many are losing their kids. Too many watch them struggle daily.

I challenge you to look around and learn the lessons but also try to teach too. Whether you have no financial issues, your child is the picture of perfect health, and your life is all around wonderful; you still have lessons to learn and you still have lessons to teach. I hope that you can learn from our Mito Warrior Princess. I hope that you can learn from good fortune and bad.

Hospital

2011-01-06T11:40:00.002-06:00

We have been inpatient for 9 days with no end in clear view. Check out

Www.carepages.com/carepages/delaneylower

Www.starkravingmadmommy.com post about d today

Www.give forward.org/our-angel-delaney

Look up Team Delaney on Facebook next week

Be on the look out for the Dance for Delaney. Details to come.

Fundraiser for Delaney

2011-01-03T16:44:00.002-06:00

This is Jess. I'm just going to post really quick about a fundraiser my friend Vicky is doing with her Thirty One business to help Delaney. For the month of January she's donating $5 of every $31 spent to Delaney to help us get to Cleveland in February to see her mito. specialists. So please take a look at the link below and do a little shopping for Delaney!!!

http://www.mythirtyone.com/shop/catalog.aspx?eventId=E450281&from=DIRECTLINK

Happy Holidays

2010-12-27T14:33:00.005-06:00

In this home we celebrate Christmas. It was magical around here the night we opened Christmas Eve gifts and the morning we opened Christmas presents. We spent lots of time with Uncle Chris and Gma and Papa. Delaney really got in to opening gifts this year. It really brought the magic back for her sisters.

Some highlights.

Charlotte played two songs she'd memorized on the keyboard.

Julia's face after reading the Elf on the Shelf book.

Delaney patting the presents.

Charlotte's face after opening the largest sketch book ever.

Julia climbing on my lap to read her portion of the Christmas Story.

Delaney's face upon seeing her new doll and the crib to go with the doll.

Charlotte's ability to help spark the magic of Christmas for her sisters.

Julia having a magical afternoon/evening with her grandma.

Delaney loving on her grandma, grandpa, and Uncle Chris.

Thanks to everyone who helped make this such a magical holiday for our kids.

Julia Bean Turns 9!!!!

2010-12-07T08:22:00.007-06:00

To think this is where is all started for me...I know Jess and her dad go back to the beginning but for me this is where I entered her life story. And I think of this little face everytime I close my eyes and think of Julia.

I cannot believe our little beanie is 9 years old. Gosh... I remember when I met her. When it started for me. Those curls and that smile. Oh my that smile. She has grown since then. Today I would describe Julia has upbeat, helpful, loving, passionate, creative, active, super intelligent, insanely loyal, and viciously protective.

I am so grateful to be her "mama". Raising and homeschooling her has been nothing short of a challenge but also one of the most rewarding adventures I have ever been on. To see just how intelligent she is first hand is mind blowing. To watch her build and create and draw and play keyboard and experiment with new things brings a smile to my face. To watch her be ferociously protective of Char (when they aren't fighting) and Delaney makes me proud.

Her totally awesome birthday cake. Jess came up with the idea and I got our wedding cake decorator to make it for Julia. We could not have imagined a better cake.

Now this is an awesome reaction to seeing the cake for the first time.

Totally worth keeping it a surprise! :)

The perfect doll from Grandma and Papa! She sleeps with her. She plays with her. She's totally in love.

Her Aunt Jennie and Uncle Dylan sent her real rollerskates. I think she liked them lol

Um yeah she totally loved them!!!

Watching her open presents is fun!

She LOVES LOVES LOVES Legos....so Jess found this game and we couldn't resist!

She is not short of facial expressions.

She is in love with animals. Jess and her mom (Grandma) found this while they were out looking for other things. I don't think they could have picked a more perfect gift for Julia.

Beaux Babies

2010-12-01T22:29:00.002-06:00

Our friend makes custom bows and bow holders. She has asked to donated a % of December sales to Delaneys medical expenses. If you have Facebook please go check them out. Pass the info along to everyone you know!!!!!!

Beaux Babies

Tell them we sent you.

Many Have Asked

2010-11-29T14:15:00.003-06:00

Many have sent private messages on text and facebook and email asking how they can help.

Prayer is number one! The power of prayer is unbeatable.

Research Mitochondrial Disease and be an ambassador of knowledge for all of those affected by Mito. Share what you know. Ask questions for what you don't know.

Assistance for when we are in the hospital, etc. We each have talents. We ask that occasionally you share your talents with our family. :)

Keep leaving messages. We love love love to read all the support and love and care.

We need to fundraise to help offset some of the uncovered costs. If anyone has an expertise in this we would appreciate the help. We are so busy with daily life that fundraising is always an after thought but a necessary evil. We have paypal set up on our blog www.wannabeearthmamas.blogspot.com if you want to share that. We also have a fundraiser started on Give Forward. http://www.giveforward.com/our-angel-delaney You can share that link on facebook, twitter, and your blog. We are also trying to figure out tshirt and arm band sales for after the new year.

The report is in

2010-11-27T22:23:00.002-06:00

We have our report with Delaneys diagnosis. If you would like to know what it says please visit www.carepages.com/carepages/delaneylower

Update on the kids. Char is working super hard creatively and academically. She is almost completely finished with 8th grade. She has done several murals that I'm hoping to post soon. She has started sewing again and is planning some projects with fleece. Julia is also booming creatively and academically. She is getting super close to being done with 3rd grade. She is a whiz at math facts. She has been building with legos again and creating some masterpieces. I will have to take some pictures soon. Delaney has pneumonia and a kidney infection. She is now on oxygen almost full time. However she is working diligently on putting on her own socks. She loves smoothing out her bed blankets and watching movies.

Uncle Chris

2010-11-03T17:39:00.010-05:00

This is an old picture of Chris and Jess. They have been through a LOT together and in the end they always find their way back to one another's side. I know that Jess' heart overflows with love for her friend.

I wanted to let the girls Uncle Chris know in a very public way how much we love him. How proud of him we are. We all need pick me ups. We all need to know we are appreciated and are loved without condition. We all need to know that those around us notice and are proud of us. And I have the unique ability to do this for Chris in a very public way through my blog.

Chris has grown leaps and bounds this year. He has matured in a way that only "valleys" can do to you. He has accomplished more in his career this year than in previous years. He has worked hard to learn himself. He has been a great friend. His love for the girls is felt from thousands of miles away. He is constantly texting words of love and encouragement. He skypes them. When he comes in town he ALWAYS blocks out time to just spend with the girls. Recently he sent us a request to have the girls watch the Katy Perry music video of Firework. He wanted the girls to know they are fireworks. They are amazing. He is THAT type of guy. He is loving and caring and growing.

Here is Chris with Delaney in July

Here is Chris with Julia at Christmas 2009

Here is another with Delaney in Mexico...poor girl was exhausted and Chris just sat with her and snuggled her

This is an amazing photo of Charlotte with Chris...walking down the isle at Bill's wedding

This is a photo of Chris on Dexter...um yeah seriously DEXTER! Totally cool and totally proud of him :)

And here is the video he wanted our girls to see and hear.

Sleep Study

2010-11-01T14:46:00.002-05:00

For those of you that don't follow Delaney's carepage here are some images from last night's sleep study. It was a horrible experience.

Precious

2010-10-28T15:34:00.001-05:00

Relationships

2010-10-27T15:34:00.003-05:00

Our family is part of a very special world. With Jess working in the NICU where unfortunately some babies don't make it and Delaney is friends with several children that struggle with health we are often reminded that life is all too short. We talk a LOT to the girls about God and life and appreciation of life and building relationships and that ALL relationships take work. We talk about making words count and building relationships. We talk about how God is with us. God is constantly showing us our path. It's up to us to sit in the silence long enough to hear the message. We talk about not taking life for granted. Learning. Living. Laughing. Loving. Giving. With all of our selves. Realizing that life is just too short to give half effort in any of those things. We don't focus on death AT ALL. In fact death is rarely discussed. We talk about LIFE. We talk about LIVING. We talk about God and finding our peace in God. We talk about believing and faith.

Today we talked a lot about ALL of these things. We took a walk to downtown Overland Park to visit a new restaurant. We walked half a mile there and half a mile back. It's called the Shake Shack. It's all local, organic, and sustainable. Infact, while we were there a local farmer brought in his tomatoes. They sell burgers, hotdogs, salmon sandwiches, and veggie burgers. They also have fries, onion rings, and shakes. Everything is local, organic, and sustainable. Everything! The place is set up like a 1950s diner with everyone eating at the counter top while sitting on stools. We enjoyed the fall day. We talked about local products. We got some exercise. And we enjoyed laughter, singing, and good food.

Life is short my friend. When you look back on your life will you regret what has happened over the years? The decisions you've made? The effort you have put into relationships? The mean or made up things you've said about others? Or will you look back and say that overall you've put your best effort towards relationships and words and decisions??

No one is perfect but we are trying to be more conscious of the things we say, the decisions we make, the relationships we keep. We challenge you to do the same.

Charlotte's Poem for Jess

2010-10-25T16:06:00.000-05:00

Charlotte's poem for Jess

Twas the night before Wednesday
And all through the house
We prepared for Mom time
Even her spouse

Homework done
Top Model recorded
Just for her we have
All this love hoarded

We make sure we have pop
And Chef Boyardee pizza
And all of Mommy's
Favorite treatas

Tomorrow will be swell
Won't it be nice
To fill Mommy's cup
With tea, water, and ice

We love our mommy
She's the best
But before mom day
We need our rest

Good night!

Purple Stride 2010

2010-10-22T10:21:00.006-05:00

We gathered together on October 16th and 17th to honor Sandy Stewart. Our daughter, sister, aunt, cousin, and friend. We gathered as a family to pay tribute. We felt the hole our lives now have because you are not here. We felt the love you still send us all. We laughed. We cried. We told stories. We will continue to honor you, Sandy, in our daily lives. I am sad that I (Kathy) was unable to get to know you as fully as others did but you impacted most of my family so you impact me. We love you and we know you are shining down on all of us.

Char loses the braces

2010-10-22T10:19:00.002-05:00

These were the before pictures I already posted the after picture. :) We are proud.

Singing

2010-10-22T10:02:00.002-05:00

When we say she loves The Little Mermaid...like may be an understatement

Jerking makes it hard to sleep

2010-10-22T09:30:00.002-05:00

This is an example of fairly mild jerking that Delaney does while she sleeps. It's called myoclonus. It can get so bad that she almost comes off the surface she is sleeping on because the jerk is so dramatic.

Talk about Cute!!!

2010-10-14T14:30:00.002-05:00

Valdean and my dad sent these outfits and pair of pjs to Delaney. I am so overjoyed at how cute they are. Thank you so so so so much!!!

Gift from Nanny

2010-10-13T20:25:00.002-05:00

Nanny sent Delaney her very own art easel!!!!

Co Op

2010-10-13T19:11:00.002-05:00

Science

2010-10-12T15:35:00.003-05:00

So it's a LOT of work to find curriculum for homeschooling especially since we piece together different types from different companies to meet the needs of each individual child.

I was SO SO SO excited to find this science curriculum for Julia because it was interactive, bright, fun, and incorporated lots of different things into the science lesson. Today in the "writing link" it asked her to write a poem. The lesson is on minerals and rocks.

It definitely shows Julia's humor. And I wanted to share it.

Poetry Rocks!
Everybody uses rocks.
Even when they have the chicken rocks.
They use clay
Well the kids play with chalk
And grass can look like a bass
Bricks dont stick
This is my poem about rocks....
They really rock!!!!

A fall day

2010-10-07T17:18:00.003-05:00

Making sugar cookies from scratch from epicurious.com from the ipad

Passed out

Julia working on homework

beautiful girl

Talking on the phone

2010-10-03T19:42:00.002-05:00

All the kids talked to Grandpa Mikey on the phone today. And This picture was just toooo cute to pass up.

Peace Talks

2010-10-03T12:03:00.007-05:00

We have been talking a LOT about peace, peaceful choices, peaceful spaces, peaceful words, peaceful actions around here. This morning I encouraged the girls to sit together and discuss their idea of peace. What words they think are peaceful and what words they think take away from peace. What actions they think are peaceful and what actions they think take away from peace. How they plan to show peace to themselves, to others, to their home, to their community, to their friends, to the world.
Julia's answers as told by Charlotte
What is peace? Helping and kindness and love

How can you show peace in your life, your house, your community, your world? Do your chores, open the door for someone else, helping grandparents

What are peaceful words/language? I love you, love, God, heaven, helping can i help you, silence sometimes silence is the best way to be peaceful

What are non peaceful words/language? I hate you, get out of my life you suck

What are peaceful actions? Helping, hugging, kissing

What are non peaceful actions? Screaming, hitting, kicking

Oh and I totally forgot to share some super exciting news. Charlotte got her braces off!!! And she's got the most gorgeous smile!

Charlotte's answers as told by Julia
What is peace? Helpfulness, kindness, caring, not losing your temper

How can you show peace in your life, your house, your community, your world? Noticing when someone is in need and helping them before they have to ask for it, helping whenever possible, taking care of yourself

What are peaceful words/language? May I help you, Compliments that you mean to the heart not just saying it

What are non peaceful words/language? I hate you, get out of my life, compliments that you don't mean, insults, unkind or rude remarks

What are peaceful actions? helping, being kind to yourself, having patience, learning to control yourself

What are non peaceful actions? stomping, kicking, yelling, losing your temper, procrastinating, pushing your work on other people

This exercise was about more than just the answers. It was about listening to each other deeply enough that they understand and retained their words. It took three times for them to be able to explain the other person's thoughts on the questions. I want them to understand that asking questions is about more than asking...it's about LISTENING to and taking in the answer the other person responds with. It's about looking them in the eyes and truly caring about what they think. Our girls are amazing girls. They are thoughtful and caring to others in the world. As they get older they are losing their thoughtfulness towards one another. They are reading Heartsongs. I am hoping that the poetry of another kid will sink to their hearts. And inspire them to write their own poetry. Or inspire them in other ways. I am eager to see who our girls are going to grow in to!

Louisburg Cider Mill Take 1

2010-10-02T16:07:00.004-05:00

This morning me, Charlotte, and Delaney went to the Cider Mill. They were having a craft fair and live music. We of course got cider donuts and some jug cider as well as some soup mixes. Julia stayed at home with Jess who is sick.

We are planning on returning one night for the corn maze and hay ride. And returning another day during the day to pick up more donuts and cider. It's a fun fall tradition.

This is a song for my wife

2010-10-01T11:32:00.000-05:00

An old friend of mine posted this on facebook. Her boyfriend found it for her and wanted her to know how much she means to him. I wanted to pass this song along to my wife. She is one amazing woman.

Thoughts

2010-09-30T09:38:00.002-05:00

As I sit here and watching Charlotte complete her vocabulary and watch Julia complete her math and watch Delaney sit on the floor and read her books I am finishing The Messenger by Jeni Stepanek.

I am waiting for Delaney's best friend to get out of surgery for her muscle biopsy. I am waiting for the speech therapist to come and visit Delaney. I am waiting for Charlotte to finish her school work so that we can talk about what we will do this weekend. I am waiting for Julia to finish her school work so that I can watch her play outside and enjoy the gorgeous day.

For me life has always been a hurry up and wait situation. Hurry up and get ready so you can wait on the start of school. Hurry up and get ready so you can wait on your teammates to arrive for practice. Hurry up and do all of you work so you can wait for the next assignment to be given. Hurry up and get dinner ready so you can wait on everyone to sit down and be ready.

Reading The Messenger has been thought provoking to say the least. In a time where we are in limbo...waiting...to hear what our youngest daughter's true definite diagnosis is...it was probably not the best book to read. In this waiting period our nerves/emotions are raw. They are exposed for the world to attack. Tears are flowing a lot more freely during these days of wait. Tempers are flaring a lot quicker. Anxiety is creeping up out of no where. We are living this life of frequent infections, constant feeding issues, seizures, gaining and losing skills, tears, pain, joy, triumph, simplicity, humor, learning, and laughing. We are living it without a name. And for some reason...for us...we need that name.

So anyway as I finish this book a piece of it sticks out to me and I want to share it with all of you...well at least those that still actually read this blog. (if you are out there leave us a message so we know we still have readers) :)

"This book offers the story of Mattie's choice, his decision to celebrate life and perceive it as a worthy blessing even during the most painful moments. It would be his hope, and mine, that his example now serve as a reminder that while we can't always plan our future or choose what becomes our memories, what happens doesn't have to define us, or limit us, or control us. We can always find something good in the moment at hand, in whatever comes next, and even in how we reflect on the truth of things past, and in that way, help shape the world. That is his essence, his legacy. As Mattie wrote: Blessed are those who, Bear the Torch of hope, For they shall have peace!"

We have a choice. We have a choice to add to the beauty of the world...or take away from it. I know I don't always make the right choices but I try to learn from the wrong ones.

Basically what I'm trying to say is whether your plight is a sick/special kid, a rocky marriage, your own illness, strained relationships, financial issues...read this book. It brings it all back into focus. You will be laughing out loud, talking to the book in places, and crying. It's an amazing read. One that I hope my kids will all read someday.

2010-09-24T14:14:00.002-05:00

I Could…If They Would

If they would find a cure when I'm a kid…
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I'm a teenager…
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I'm a young adult…
I could travel around the world and teach peace, and
I could marry and have children of my own.
If they would find a cure when I'm grown old…
I could visit exotic places and appreciate culture, and
I could proudly share pictures of my grandchildren.
If they would find a cure when I'm alive…
I could live each day without pain and machines, and
I could celebrate the biggest thank you of life ever.
If they would find a cure when I'm buried into Heaven…
I could still celebrate with my brothers and sister there, and
I could still be happy knowing that I was part of the effort.

here is the link to the youtube video of the song

2010-09-24T08:50:00.003-05:00

From moment to moment things change. For a few minutes/hours/a whole day our kids are hardly different from their peers. But then in a split second, for no outside reason, they come crashing down. We, as parents, mourn those times. We grieve. We are overcome with fear that THIS crash could be the one our child never bounces back from. Our kids are real, they cry and they laugh. And souls like theirs are so very rare. As parents, we are afraid and we are hopeful. - God never promised it would be easy. He just promised you would never do it alone.

I wrote that in an email to a couple of Mito moms yesterday. One of the moms reposted it on her facebook page. I didn't realize at the time that my words would hit her like they did. I was really just trying to let her know even though we don't have a final diagnosis for Delaney that we understand fully what she's going through. I was trying to share with her that Mattie Stepanek author of Heartsongs and a "Mito Warrior" and his mom Jenni Stepanek author of Messenger and a "Mito Warrior" were inspirational for us right now.

This week is coming to a close. Many of you have done research on Mito this week. Some have donated to United Mitochondrial Disease Foundation in honor of Delaney. Some have donated to Delaney's medical expenses. Some have prayed. Some have given thought about her this week. Some have simply taken the time to read my blog posts, no matter how scattered. Some have signed up to read our carepage. Thank you. There are no words to tell you what it feels like to have ANY of these things done for Delaney. It makes us feel a lot less alone. It takes a village to raise a child. Well I"m pretty sure it takes a whole country to raise a special needs one. So thank you for being our country.

Julia provides comic relief. She PLAYS with Delaney. She talks to her. She protects her. She adores her. And Delaney pretty much adores Julia. Smiles huge when she enters a room. Laughs at all her jokes. Cuddles with her. Julia is a great big sister.

Charlotte is our protector. She's the hands on sister. She is constantly asking to help with diapers, clothing changes, medicines, feeds, etc. She soothes Delaney. She teaches her. She includes her. She is definitely a biggest sister. And Delaney's day isn't complete without her Charlotte. One of D's sometimes words is CharChar. She will search Char out in the house. She will have "conversations" with Char. She loves her so very much.

With her sisters at her side she can traverse any obstacle. They can usually be seen flanking her. Surrounding her. Without any prompting they protect her and join together to make her laugh. And I must say Delaney makes them laugh too. God chose these girls specifically to be her sisters and I am so very proud and honored to be their parent.

We sure have fun in this house. Pig tails all around. Delaney got them, then Charlotte put them in, then Julia requested them. That's usually how it goes here. Char starts dancing, then Julia starts dancing, then Delaney starts dancing. Or whatever the activity may be its usually done as a group.

This is an older picture too but boy does it show them in their true style. Even though some days pretty much suck raising three girls (hormones, emotions, etc) days like this one are so very worth the rough days.

2010-09-23T16:17:00.001-05:00

2010-09-23T16:05:00.003-05:00

We are reading Heartsongs and Messenger in honor of Mitochondrial Awareness Week. Mattie Stepanek, his three siblings, and his mom all suffered from Mitochondrial Disease. I wanted to share a couple of poems I read of his.

About Promises

Promises
Should be
Taken seriously
Because
They involve
Something
That will
Somehow
Touch
The future
Of some life

April 2000

Royal Decree

Once you make a friend,
Never stop being a friend to them.
Celebrate all the holidays, somehow.
Don't drink alcohol unwisely.
Do not be evil, mean, or bad.
Don't say any bad words,
Especially words like "Shut Up!"
Believe in the Clean Dish Fairy.
Put on the porch life if
A family member is out after dark.
Use your best manners, no exceptions.
Always have an interest.
Be gentle with people and the earth.
Don't do any bad things.
Be patient with yourself and others.
Be good everywhere you are and go.
Decree that you love life, every day.

April 1998

What if I Stumble- DC Talk

2010-09-22T20:28:00.000-05:00

"The greatest single cause of atheism in the world today
Is Christians who acknowledge Jesus with their lips
Then walk out the door and deny him by their lifestyle.
That is what an unbelieving world simply finds unbelievable."

Is this one for the people? Is this one for the Lord?
Or do I simply serenade for things I must afford?
You can jumble them together, my conflict still remains
Holiness is calling, in the midst of courting fame
Cause I see the trust in their eyes
Though the sky is falling
They need Your love in their lives
Compromise is calling

What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble, what if I fall?
You never turn in the heat of it all
What if I stumble, what if I fall?

Father please forgive me for I can not compose
The fear that lives within me
Or the rate at which it grows
If struggle has a purpose on the narrow road you've carved
Why do I dread my trespasses will leave a deadly scar
Do they see the fear in my eyes? Are they so revealing?
This time I cannot disguise all the doubt I'm feeling

What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble?
Everyone's got to crawl when you know that
You're up against a wall, it's about to fall
Everyone's got to crawl when you know that

I hear You whispering my name [You say]
"My love for You will never change" [never change]

What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble, what if I fall?
You never turn in the heat of it all
What if I stumble, what if I fall?
You are my comfort, and my God

Is this one for the people, is this one for the Lord?

For Mito Awareness Week

2010-09-21T19:05:00.001-05:00

Check out this link!

http://www.youtube.com/watch?v=8PApuJs_vPA&feature=youtube_gdata_player

What is Mitochondrial Disease

2010-09-09T16:18:00.004-05:00

We feel like people just don't understand what mito is and why this is so serious so I thought I'd direct you to look at the website FAQs. Happy reading!!

http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692895/k.B04C/FAQs.htm

*****

PS From Kathy: We are facing an unknown diagnosis. We are not saying that she HAS mito. We are simply saying that doctor after doctor has looked at us when we said we are going to Atlanta (after her neurologist referred her) and said "oh that makes a lot of sense". It becomes more and more real that it's a honest possibility. Mito is not fun. It's not cureable. We don't want that to be on our daughter's list of diagnoses. BUT It's life. It's what we are facing. It's what at this time we are trying to process. I mean honestly they are cutting Delaney's leg open and sticking a needle in her back to extract fluid to test for this disease. If it wasn't a big possibility of the answer we would NOT put her through it. Thank you for hanging in there while we search for answers and live life. I am glad that Jess posted this to share information. We have some friends whose children have Mitochondrial Disease already diagnosed. We have other friends that are in the process like us. And it's important to get the word out. To make Mitochondrial Disease a household name so research and support grow!

Benefits to Homeschooling

2010-09-08T18:47:00.004-05:00

Our girls have experiences that they wouldn't normally have.

When Delaney was in the hospital the girls came to visit and spend a couple of days up there. While up there they were able to meet the buddy that Delaney and I had gotten to know. Her name is Audrey. She's 7 and is battling AML leukemia. Julia really struck up a friendship. They like a lot of the same things and played for HOURS. This friendship would not have happened had our girls been in a traditional school.

Last week we went up to bring lunch and visit Audrey and her mom and dad. The girls once again picked up where they left off and played for hours.

Today we went up again to visit Audrey and her mom. Delaney is in love with Audrey. She has just bonded to her so tightly and so quickly. It's quite amazing. Julia and Audrey play games and giggle. It's great seeing girls be girls. And then today Audrey said something that has really troubled both of the big girls. She said she didn't want her picture taken because she wasn't pretty without hair. BOTH Charlotte and Julia jumped on that explaining she was so beautiful. Delaney even rubbed Audrey's head as if to tell her she liked the lack of hair. Illness isn't just the doctors visits and medicines. It's an entire body change. Audrey lost her hair. She's lost weight. She had to get a hickman line put in. Delaney's belly has forever changed because of her gtube. She wears glasses. She wears braces. Our friend Peyton had to deal with an NG tube, braces, glasses, walker, and now an adaptive stroller/wheelchair. These little princesses that dream of dancing and twirling and playing just like everyone else...look different for one reason or another. And each of them struggle with that. I think these girls are beautiful beyond measure. I think they are amazing.

A friend sent me this poem and I wanted to share it. Author is unknown.

The wind's not always at our back,
The sky is not always blue.
Sometimes we crave the things we lack,
And don't know what to do.

Sometimes life's an uphill ride,
With mountains we must climb.
At times the river's deep and wide,
And crossing takes some time.

No one said that life is easy,
There are no guarantees.
So trust the Lord continually,
On calm or stormy seas.

The challenges we face today,
Prepares us for tomorrow.
For faith takes our fears away,
And peace replaces sorrow.

Like I said homeschooling has it's benefits. My girls got the chance to meet Audrey. They get the chance to give back to lots of children.

I am grateful for you

2010-09-07T09:07:00.001-05:00

Thank you for all of your support. The community of people following our blog is priceless to us. We have family, real life friends, online friends, complete strangers. The fact that you read her updates is amazing. Just to follow her journey...and ours is so moving. Thank you for taking that time. From the cards, prayers, gifts, donations, thoughts, messages, emails, phone calls, text messages, etc. We couldn't do it without you. Delaney looks at her cards and pictures every single time she gets a diaper change or her button cleaned. She plays with her toys everyday because they are in our living room. We are able to make trips like Atlanta possible because of donations and help babysitting the big girls. So thank you...for being there.

Prayers and Miracles

2010-09-04T17:58:00.002-05:00

The waters around us are turbulent. We know a lot of people struggling right now. I am writing this blog as a plee for prayer/positive thoughts/miracles.

First, Nathan is the son of a woman I would most definately call a friend. We met through the blogging world and have bonded through our stories. We actually do talk off blog nowadays. We had plans to meet up but Delaney started getting sick and our trip out west got cancelled. Anyway Karen is such an awesome mom. She totally trusted her mommy gut and took Nathan to the ER thinking he would maybe need a couple of days of IV antibiotics...well after surgery, PICU room, and intubation things have kind of spiraled. Although we have never met we love this family and ask for you to send your prayers and positive thoughts to them as Nathan heals and Karen watches over him. We love you!

Second, baby Violet. We met baby Violet while we were inpatient last week. She is the cutest little doll. Her mom is totally sweet and upbeat and caring. She and I walked the halls and talked. We stood in the middle of the hallway blocking toddler car traffic talking about our kiddos. Yesterday she and her husband took Violet home for good. Treatment is not working for her cancer so they took Violet home to live life to the fullest. I am asking for prayers. For a miracle. I am asking for peace for this little family.

Third, Audrey. Audrey is the most amazing 7 year old I've EVER met. She has the light of a very powerful peace worker. She is thoughtful and caring. She is hilarious. She is compassionate. She loves babies and glow sticks and crafts. She loves spongebob and playtime. She loves salad but not vegetables. She loves mac and cheese and lasagna but not pasta. :) Gotta love the thought processes of a 7 year old. She is battling a mighty big beast. AML Leukemia. She is a fighter though. She's currently in remission. However this round of chemo has really taken a toll on her. She's struggling to maintain her weight, eat, have energy. Please pray that her fight continues. That this cancer gets the hell out and stays out. Pray for her beautiful family. We love you guys!

Today I let go of everything. I let go of the tears that I had been holding in. I let go of the fears I have about Delaney. I let go of discipline and chores and schedule. I took our girls out to the playground. I watched as Julia and Charlotte instinctively surrounded Delaney as they walked the 50 yards to the playground. I watched as Charlotte picked her sister up because she had become too tired to go up the playground stairs. I listened to the laughter and giggles. I took pictures. I watched intently over our gaggle of girls. When we came home we cleaned out the little tykes car so Delaney could sit down since she was too tired to continue playing but wasn't ready to go inside. I played soccer with Julia. I played tether ball with Charlotte and then with Julia. I watched the girls play soccer together and many many rounds of tether ball. I watched all three girls enjoy popsicles outside. I listened to stories and I stopped to enjoy them.

Time is limited for ALL of us. Time with our spouse, time with our friends, time with our kids. I am figuring out a better way to spend my time. I encourage you to do the same.

Funny Video

2010-09-03T19:15:00.002-05:00

This started out as cute video of Delaney enjoying playing outside with Charlotte but then when she accidentally got her hands in some rain water she started freaking out over her hands being dirty. It's nice to be able to share her little neat freak tendencies with the world. :)

THANK YOU THANK YOU THANK YOU!!

2010-08-30T16:23:00.003-05:00

I just wanted to thank all of you that called, checked in, emailed, texted, sent mail and gifts and donated to us while Delaney was in the hospital. It meant more than you will ever know.

We finally got home around 11pm on Saturday night. It was a mess and we were not at our goal to come home but the doctor that came on for the weekend decided to take it upon himself to derail the plan we'd put in place over the whole week. Oh well there's more on that topic on our care page. (www.carepages.com/carepages/delaneylower)

While inpatient we did finally get our acceptance from Dr Shoffner in Atlanta. We have appointments on Tues September 14 for testing and lab work and then at 9am on Wednesday she's going into surgery for a lumbar puncture and muscle biopsy. It's an out patient procedure but we're planning on being there the week. So for now we're trying to get finances together to drive to Atlanta and back and stay there for a week and feed ourselves. My parents have stepped up to take care of the big kids (thanks!!!!!) and we have gotten some donations to help with the trip but we're still trying to get it all together. We have also had to pay several hundred dollars as a deposit on the surgery and the fee to re-read the MRI. It's a lot to deal with in a short time frame!!! The fundraiser we did has been super helpful getting some of the huge deductible down and getting her stroller and car seat and some other equipment we needed for her and we're so grateful for that. Unfortunately the fundraiser money has already gone away!! :( So I'm working my tail off trying to get the money together for this trip. So if you can help out at all we would be eternally grateful. This trip is so important in getting a diagnosis (FINALLY) for our little girl in order to get her the care she needs.

We have been so blessed by so many people who love us. I don't know that I'll ever be able to repay all that has been done for Delaney. It warms my heart every time I see that someone has taken time out of their day to donate or send a card or little gift to her. It makes me realize that we're not fighting this battle alone. You're all out there praying and cheering us on. I love you all for that!!!

Update

2010-08-26T19:42:00.003-05:00

Tomorrow will be one full week in the hospital and here's the update:

She's still on antibiotics but they've been switched to oral (or GT in our case). We are still here though because she's still working on feeds. We knew this would be a big hurdle. As much as we don't want to be here we really don't want to go home before we get that worked out because that's what's been going on for the last month at home! She did great on continuous feeds but as soon as they moved to bolus feeds things got a little hairy. She did great on 90mls over an hour but then as soon as they tried to move beyond that she started getting stomach upset. Today we've been at 115mls over an hour and she did okay for the first feed, then the second one we had to stop it at 90. The third time she took all 115mls but she was asleep and woke up crying around 100mls. We just let her fuss since she wasn't tugging at her tube or grabbing her stomach like she was before. The time after that she was about the same. She fussed around 100mls but not enough for us to stop it. We talked to the attending and he said that if she continued to have problems like that overnight we'll increase her Erythromycin dose tomorrow. We talked at length about what our goals would be and the biggest goal is to get her on 4-5 bolus feeds during the day and no feeds at night. In order to do that we'd have to get to 150ml over an hour. We are really, really far from that goal so it looks like we'll be here a while figuring this out. If by next week and upping the Erythromycin we still can't get her there the plan B goal is to do 4 bolus feeds during the day of whatever she can tolerate and then do the rest overnight as a continuous feed. So that's feeds. It'll keep us here about another 4-5 days at the least.

Here's the other little bit of news we've gotten since we've been here. (Please insert sarcasm here!) Genetics is finally on board with the high possibility of a mitochondrial disease diagnosis. When we got admitted we sent an email to our genetics counselor about wanting a referral letter from them to send with Dr Shoffner in Atlanta since he's one of the top experts on mito. and we'd like her to be seen in his clinic. Interestingly enough first thing Monday morning our geneticist Dr Smith came in and reamed Kathy for jumping so quickly (we've been trying to get her diagnosed since March) to mito. She went on an on about how there's no way she has it and we are going to get labs to prove that she doesn't. So she stomped off as quickly as she stormed in and then wrote orders for about 5 mls of blood to be drawn for various things to prove that there was no way she had mito. They drew the labs (4 sticks -another story)and then Tuesday afternoon Dr Smith storms in again singing a different tune. Two of the lab results are back and they both point STRONGLY in the direction of mito. Why will doctors never learn to listen to a mom? Grrr. More specifically, for my medically minded friends, her CPK was 993 (normal is 60-305) and her lactic acid was 4.6 (normal is 0.6-2.1). Both of these indicate there is significant muscle damage or wasting. So now Dr Smith has written said referral letter and it looks like we'll be headed to Atlanta within a month to see Dr Shoffner. That visit will include a bunch more tests as well as muscle and skin biopsies. I don't want to have to put her through all that but I also feel like we have to get a diagnosis. If she does have mito. we need to know which one because they all have different therapies (no real treatment or cure) and life expectancies.

Yeah, I said life expectancy. So basically the way Kathy and I feel is that if there is a test or procedure that can tell us how long we have with our daughter we need to know. It changes how you'd parent a child if they're not going ever be an adult. I also will do whatever I have to do and sell whatever I have to sell in order to not have to work extra shifts every single week. I'll cherish every moment I have. I know I should do it anyhow and I know after going through all this I'll cherish every moment with all my girls. Life is just too short and you never know what could happen. Nothing will ever be more important than spending time with these kids.

Videos from the hospital

2010-08-26T08:58:00.002-05:00

Hospital Stay

2010-08-26T08:51:00.003-05:00

Hospital Stay #5 this summer

2010-08-22T12:08:00.002-05:00

This is a rare post by Jess instead of Kathy. Kathy's a little less available right now and posts mostly over at Delaney's care page instead so I thought I would make sure this information got over here as well.

So Delaney is in the hospital AGAIN! This is the fifth one since May. I can't begin to tell you how exhausting it is to be doing this all the time. They're all for different things too. In May it was in St Louis for a 3 day video monitored EEG. Early June she was admitted a couple nights because she had a respiratory infection that required oxygen. In late June she had her g-tube placed so she was inpatient for a few days for that. In mid July she narrowly escaped admission for kidney infection and sepsis because I begged the doctor to give her IM antibiotics and let her go. She did, mostly I think because mom's a nurse! Admission #4 was earlier this month due to an anaphalaxis reaction to peanuts. That one was just overnight. Then that brings me to this one.

Thursday Kathy noted that Delaney just wasn't herself and that she had a peculiar odor coming from her g-tube site. We have actually noticed over the last couple weeks that it was a little gooey sometimes but we were cleaning it twice a day and she didn't appear sick at all. Although we have been having feeding issues the last month or so since her sepsis. Delaney just wasn't herself and her breath was smelling foul too so she thought she should just get her seen just in case. Thursday night she started having a low grade fever too so we knew we'd made the right decision. The appointment was Friday at 1:00 and Delaney for some reason was in a great mood! Kathy even commented to her best friend Kate that she should just take her home because she seemed so well! The doc was concerned about her site and was able to squeeze puss out of it to be cultured. He was also very concerned about it in conjunction with the feeding issues as well. So she got her blood drawn to check her blood count for infection as well as her electrolytes for dehydration. They also did a blood culture for good measure. Then he sent her to radiology to have a dye study done to make sure the g-tube was in the right place. I was working that day but was able to get my assignment covered so I could clock out and join them in radiology since he was already talking iv antibiotics and admission. I met them in radiology for the dye study and then we went back up to the clinic. The doc had some prelim. lab results by then that definitely showed that she had a staph infection in her site. That means IV antibiotics. By 4:30 pm Delaney was in a room on the 4th floor. Kathy had the kids with her so I took them back to the house and got stuff for Kathy and Delaney to spend the night. We went back up there around 6:00 with dinner and stayed about an hour and then I brought the kids home.

That first night we learned that she'd be inpatient for about 7-10 days for the antibiotics and while she was there they'd make sure GI came to see her about the feeding issues she's had. The next morning GI came and was very concerned about the motility of her intestines and also the slow stomach emptying. They increased one current med to twice a day and added another med to be given three times a day. By the end of that first full day (Saturday) the stay was being estimated at 10-14 days and might include a few more trips to radiology to check out how her digestive system works. They started her on continuous feeds at a very slow rate Saturday afternoon and decreased her IV fluid rate. She had a pretty decent day but was really low energy and really pissed about the IV in her foot. Oh one more thing they noticed Friday night and Saturday! She has funky blood pressures. Her systolic (top number) is a lot higher than her diastolic. The difference between the two is supposed to be about 30-40. Hers is about 70! Apparently this can be indicative of septic shock or a heart defect. They're continuing to monitor it but aren't doing anything about it just yet. My thought is that if it continues after several days of antibiotics she might be getting another echocardiogram. We'll see.

Today they're still increasing her continuous feed rate and decreasing her IV fluid rate. We're hoping the IV fluids are done soon! She'll meet her goal on continuous feeds of 30 ml/hr today and they want her to tolerate that for 24 hours before they start trying bolus feeds. I already know she can tolerate continuous feeds. We'll see how she does! The other development for today is that they are concerned that she might have hirshprungs. In order to find this out they'd have to do a rectal biopsy. We're hoping that she starts having some normal poos (she never has before but you know . . . ) so they don't have to do that but time will tell. They are also transferring her to GI service tomorrow from general medical service since the infection got her in but now that they see her they're realizing that she has some major GI issues. We've been concerned about her GI issues since she was a baby but no one ever listened so it sucks that it took this but I'm glad she's finally getting some attention. I just hope this doesn't turn into a bigger deal that involves weeks in the hospital and a bunch of invasive procedures!!!

Oh and to make matters worse - the big girls are sick!! Julia came down with a fever yesterday morning and Char followed suit last night. So I've been sequestering them from their sister. That's been hard. The fevers have broken for now so I'm crossing my fingers that they stay that way so they can visit their sister on Tuesday when I'm off work. Otherwise I'll be sequestered from the baby as well.

So that's what is going on for us right now! Several people have asked how they can help out and so I've swallowed my pride and come up with a few suggestions:

1. Hospital food stinks! It would be lovely if you would bring some food to Kathy. If you want to know when would be a good time please just call, email or text Kathy or I and we'll let you know!

2. Visitors are always a welcome distraction. The best time to do so would be late morning, around lunch time before 2, and evening.

3. A couple people have called the Children's Mercy gift shop and bought a little toy or balloon for Delaney to be sent to her room. She gets a big kick out of this and it lightens Kathy's spirits as well.

4. It's a financial strain to be in the hospital and I'm trying my best to keep working but that's not always possible. If you go to the top of this website you will see a yellow donate button. It directs you to pay pal. Anything at all would be helpful.

Okay that was painful! I hate asking for help but with all that's gone on it's just necessary!!! I'll do my best to keep this as updated as possible or you can always go to www.carepages.com/carepages/delaneylower and see her care page. You have to sign up to look at it but they don't send you email or anything. It's just so you can get updated (if you want to) when her page is updated.

Play Time at Gma and Gpas

2010-08-18T20:19:00.004-05:00

Energy for Life Walk

2010-08-17T08:37:00.001-05:00

We are walking in the Energy for Life Walk. We are trying to raise money for Mitochondrial Disease research. Although we are unsure if this is the path that Delaney will travel we do know that several of her friends are walking this difficult journey. Please come join us on "Team Delaney". You can donate and/or walk with us and buy a shirt. $1, $5, $10 makes a huge difference. This particular disease has so little research being done...and research is the key to treatment options!!!!!!!!!

www.energyforlifewalk.org/kansascity

Cards...Cards...Everywhere

2010-08-12T17:53:00.003-05:00

Charlotte and Julia have taken on a huge task this year...they are doing a "Year of Service" and have chosen to send cards, crafts, and gifts to sick children and their siblings. So far they have 17 kids on the list. They make cards or crafts for 1 hour after school every day. They are putting their hearts into this project and we are SO very proud of them. Today they delivered their first package to a friend who has been struggling with allergies. He and his sister loved their special handmade cards and the glow sticks that the girls included in the package. I know that it makes our girls feel more empowered to help others...especially other kids. It also makes them aware of the daily struggles of other children and their siblings. If you have anyone you would like us to add to the list please get in touch with me! Also if you have any 8x10 or 5x7 envelopes, crafts, or art supplies you'd like to donate to their cause please let me know.

Also I wanted to share that we have started a "Thinking of you" wall or Delaney. It's behind her medical changing station where we do diaper changes and gtube care and feed hook ups and medicine. We started with pictures we took in Virginia of her, her sisters, and her best friend. We added things as she received them in the mail. It is amazing how quickly she has added to her wall. She LOVES all the pretty cards and small gifts. Gosh...she carries around the Bear that Amara sent her. She actually kissed the card she got from her Cole's Foundation Sponsor sent her. She wears the reuseable gtube pads Nicole sent her. She sits on, lays on, and carries around hr Bearghan that Heartmade Blessings sent her. I know if she could talk she would say THANK YOU!

Julia My Dear

2010-08-06T15:08:00.003-05:00

Last night Julia called us from Utah. Here's how the conversation went...

Julia: I had a nosebleed today before the ski resort.
Me: Oh no! Are you okay?
J: Yes. And guess what?! Everyone waited on me instead of leaving me at the house. That's what family is mama...they stayed with me.
M: That's so great Julia. I"m glad they all waited for you. Did you have fun at the ski resort?
J: YES! I even did a backflip on the trampoline bungee thing. Let me tell you that hurt and it was so hard. Don't ever try it yourself mama. You might get real hurt.
M: Oh okay thanks for the warning.
J: Then we came home and the kids all played downstairs. I found a white sheet and wore it like a ghost. I thought it would be neat to be a ghost.
M: You are so creative.
J: Yeah except I couldn't see so I ran into the wall but don't worry I'm okay I just busted my head open and bit my tongue.
M: Oh no honey that sounds awful.
J: Oh no there was just a little blood in my mouth and on my head.
M: Goodness gracious darling. Take care of yourself

She is such a mess but such a WONDERFULLY amazing energetic caring compassionate creative kid...

Charlotte My Love

2010-08-05T13:40:00.003-05:00

Charlotte is a literal kind of kid.

She started her school work, by choice, last week...before her vacation to Utah.

She did her grammar and remarked several times that I picked a tough curriculum. One particular page was bothering her...I'll share a few of her responses

What do these mean?

1. A bird in the hand is worth two in the bush.
It is easier to see something than do something.

2. Don't put all your eggs in one basket.
Don't take more than you can handle.

3. The squeeky wheel gets the oil.
Talking about your problems can solve them.

4. A rolling stone gathers no moss.
You can't attract things without waiting.

5. You made your bed you lie in it.
Work hard then relax.

I love her.

The Love of Strangers

2010-08-05T12:50:00.006-05:00

Delaney received some gtube pads earlier this week from N. She is one crafty lady. They are SUPER SUPER cute and the card she sent was amazing.

Delaney also received a package in the mail this afternoon. In it there was a letter that reads..

Dear Delaney,
My name is Peyton. Someone told me that you are being very brave right now, but it can still be scary. I have been made by lots of people from far away places to help you feel better and not so alone!
When you are feeling scared or sad or just tired of all the trips to the doctor, cuddle up with me and feel the love that went into each stitch. I hope that this bearghan will remind you that there are those who love you and want you to get better real soon.
When you cuddle with me you can feel the love that was put into each stitch, like a hug fom all of us!
Hugs and Happy Thought
B.C.
On behalf of heartmade blessings.

Energy For Life Walk

2010-08-02T13:59:00.002-05:00

When: September 19th
For What: Mitochondrial Disease Research

You can join our team as a walker or a virtual walker. It is free to join and we just ask you to try to raise at least $20. You can also purchase a team shirt that will have Team Delaney printed on the back. The shirt is only $7 and can go towards your $20 goal. :) You don't have to walk to buy a shirt. You don't even have to live in the state! lol

Please let me know if you are interested in join, donating, or buying a shirt so that I can get that information to Jess.

We would love to see everyone!

The Climb

2010-07-30T15:47:00.003-05:00

Okay so I am the first to gag when I hear the name Hannah Montana or Miley Cyrus. I am SO thankful the girls moved past her music and shows quickly. However there are just certain songs that strike you...move you...ring over and over in your head...make you tear up...and make your 1 year old dance. This song is what it feels like to be me...feels like to be my best friend...feels like to be Delaney...feels like to be Peyton...

This is a tough road to follow. Some days you really do feel like you'll never reach your goals...you feel like you're lost...you are shaken to your core and your faith is in shambles. And in those moments you just have to focus on putting one foot in front of another...nothing more. Eventually you climb the mountain and are stronger because of it.

Although our life isn't easy it is fulfilling. Every single day is a struggle in one way or another. It seems the easiest emotional days are our days spent in crisis and our hardest emotional days are our days out of immediate crisis.

I know that sometimes people in our lives have thought I was crazy or rude or controlling for the choices I have made in regards to Delaney. I can't explain why I have made the choices I made except to say that I have ALWAYS followed my mommy gut with her. And in the end that has paid off more than you could ever know. It has literally saved her life more than once. Even Jess is so in tuned to Delaney that she has that instinctual feeling too.

I just wanted to share our song...

The Climb lyrics
Songwriters: Alexander, J; Mabe, J;
I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

Button Buddies

2010-07-29T17:27:00.005-05:00

In case any of you were wondering where some of the money went that we raised...they went to buy these reuseable "button buddies" for her gtube. Not only are they pretty...fit for a princess...they will help her tummy from getting irritated by all the tape

If you know anyone that has a gtube consider sending them some of these! (shameless plug Delaney loves ALL of them!) The mom who runs this company has a little boy with Mitochondrial Disease. They use this to raise money for his medical bills. www.mybuttonbuddies.com I don't get anything for advertising them...however if you do order from them just let her know I sent you.

New videos

2010-07-28T15:33:00.002-05:00

Baby girl is sick

2010-07-18T07:52:00.003-05:00

Last night was day 3 of fevers over 103 degrees. Even on a strict regiment of tylenol/motrin every three hours, cool pedialyte via her tube, and cool cloths on her skin we were unable to get her temperature below 101. We called the on call doctor yesterday and he instructed us to go to Urgent Care at CMH South. We of course loaded her up and went. The doctor that saw us there said that she believed she had a kidney infection and possible sepsis. She wanted to run several blood tests and cultures as well as cath her to get urine for more tests. The tests came back showing she was fighting a big infection but not yet fighting sepsis. She gave her a shot of rocephin which is a big time antibiotic that lasts 24 hours. (yesterday she took her daily bactrim, her newly prescribed omnicef, and then rocephin...which makes 3 antibiotics) If Delaney is not better with no fever by tonight we have to bring her back in for more blood work and another rocephin shot.

Delaney is 18 months

2010-07-13T12:03:00.003-05:00

Well she will be in two days...

A lot has happened in her little life.

In the past month she has take a 20 hour car trip to VA beach and a 20 hour car trip back to KC.

She has had a gtube placed.

She has been hospitalized for respiratory issues.

She has started saying words...mommom, Char Char, Sissssss, yeah, bu N (button), up, out, papa, shoes, and fish. Although all but the first two are pretty inconsistent.

She LOVES pretend playing with Julia.

She LOVES music.

She is still an outdoor girl.

She LOVES trying on new clothes and playing dress up.

She enjoys skyping.

She carries a purse.

She watches her Two Peas in a Pod video obsessively.

She no longer flinches or cries when her blood is drawn.

She is 20lbs even.

She is 29.5 inches tall.

She likes to clean.

She has started using her snack trap.

She loves cucumbers and fruit and enchiladas and pasta and cheese and pizza.

She does NOT like meat, carrots, peas, green beans, and broccoli.

She loves her little tykes club house

She likes swimming.

She loves dolls.

Posters

2010-07-12T17:51:00.001-05:00

We are making posters for each girl of their experiences in VA Beach.

Virginia

2010-07-12T16:31:00.014-05:00

We went to Virginia Sunday night of last week. We drove 4.5 hours Sunday night and then another 15.5 hours on Monday. We arrived super late but were super excited to get out of the van. The big girls did amazingly wonderful. They kept themselves busy with NO electronics. They created and read and learned. Delaney also did good. She only cried the last hour or so on and off.
Tuesday we gave and received TONS of hugs. D and I went to the pediatrician with P and K. Then we came back and just hung out and played it calm and easy. We also let the kids play in the pool out back.
Wednesday Chloe had her ear tube surgery and we went to the park for every BODY (special needs) at the beach called Grommet Island. It was amazing and all of the kids had a blast.

Thursday we went to the Francis Land house and learned about the history of the area and the house. It was really informative. When we got home all children 7 and older wrote a short paper about what they had learned. The kids played in the sprinkler and ate watermelon before bed.

Friday Char accompanied Peyton and Kate to CHKD for Peyton's upper gi and small bowel series. This process took forever. We took that time to get the house back in order, do and fold laundry, and get the little ones down for a VERY long nap. I also took Julia and Jacob to a local park to run off some energy. After we enjoyed an early dinner we went to Beach Street and the boardwalk. We ate custard and listened to live music and watched street performers. We took our shoes off and treked down to the water where we put our feet in the Atlantic. We also bought some shirts. Saturday morning we said a VERY tearful goodbye and headed to the Virginia Holocaust Museum in Richmond. It was extremely powerful and moving. It was terrifying and eye opening. You can learn about that event all you want but SEEING it shook all of us. We also got to meet the survivor that started this museum. He lived in a tunnel that his father dug when he was Julia's age. That put it into a whole new arena for the kids. After leaving the museum we headed to Glen Allen to have lunch with Tiff, Karli, and Lach. This was so much fun. Once we finished lunch they invited us to their printing company. Karli took the care and time and taught our girls the entire printing process. She also let the kids make a couple of shirts for Delaney. They picked the colors and painted the shirts all on their own. It was such an amazing learning experience. Charlotte is definitely inspired. She is now talking about wanting to go stay the summer with Aunt Kate and Uncle Andy and work for Karli and Tiff. We left there and drove to Kentucky (8 hours). Sunday we drove the remaining 9 hours.

This trip was so amazing. We met family and we met friends that we will keep our entire lives. We ALL connected to that place and those people. We have all sat and talked about our trip and everyone multiple times everyday since we left. I will be back in November with Delaney to meet my new nephew and our friend's new son. Then we are hoping our fam can travel to see us next spring....it's so hard to feel like you left a huge chunk of your heart somewhere else.

Simply Astounding

2010-07-03T17:34:00.003-05:00

Best friends...I remember growing up my best friend was Jessie. We had SO much fun together. We lived two houses apart. We played spies and recorded ourselves singing to the Lion King soundtrack and Travis Tritt's Ten Feet Tall and Bulletproof. I remember sleep overs and expeditions in the woods. I remember lazy summer days eating popsicles and playing in the pool. In high school I got a new best friend named Margie. We did EVERYTHING together. We played soccer every waking moment. We went to Amazon Grill once a week or more for chicken alfredo and iced tea. We drove the same model car when we both were able to drive. We slept over at her house ALL THE TIME. We visited colleges together. We shared our lives together. I've been without a best friend since I was 21. I have friends but no one that I share everything with, no one that I talk to everyday. That is until a few months ago. I met my best friend on a babycenter CP board. We were both looking for other parents with kids similar to ours except no one's kid was similar to ours. They all had spastic CP or severe hypotonic CP or whatever. When she emailed me a short blurb about her daughter Peyton I felt so connected so quickly. She was writing about MY kid. The mom and I made an instant connection. And then one day I was out walking Delaney around the neighborhood and I get a phone call from a little voice. It's Peyton telling me about her costume and just chatting away. She had taken her mom's phone and called me. These phone calls started happening regularly. And everytime she wanted to talk to DElaney. Delaney just listened to Peyton talk and then eventually started kissing the phone. Well we've been skyping together pretty much everyday for hours for about a month now. I read Peyton stories with Delaney on my lap. We turn on music and the girls get down and dance. Delaney tries to give Peyton her doll or purse or toy through the computer. Peyton tries to give me her creations through the computer. And now Delaney attempts to have Kate pick her up through the computer.

Delaney has started talking in the past month. She says Peyn, CharChar, sissis, mommom, mom, fish (fav song), shoes (loves shoes and the song), yeah, yes, up, papa, and out.

So last night Peyton went into the hospital. She was totally melting down and wanted only one person. She wanted to call Delaney, not grandma or daddy or anyone else. So she called and talked to me for a bit and then asked for DElaney. Delaney held the phone to her ear while Peyton talked to her. And all of a sudden I hear Delaney saying yeah, hmmmm, hi, pppppp, yes. She was TALKING to her best buddy on the phone. Peyton calmed down and said she could be brave now. She was playing with two My Little Ponies in the hospital and one pony told the other pony "Peyton is getting a tube in her nose today and soon will have a tube in her tummy. But no she's not afraid because DElaney has one too". So as they gave Peyton her sedative last night before inserting the tube and she got all nice and "drunk" she kept repeating "I love Delaney"

I think it's so friggin awesome that my 1 year old has a best friend and even better my best friend is her best friend's mom. And even better than that she's friends with my wife too and we're friends with her husband.

To know you are not alone in the world is the most inspiring and sustaining feeling. I have no idea how me, Jess, or Delaney would have made it through these past few months in one piece without the support from this family.

I will leave you with Delaney's first "I love you mann" drunken call from her biffer

Things I've Learned

2010-07-02T08:03:00.002-05:00

Being a parent in general changes your perspective on the world. Being a parent of a "special needs" child changes that perspective even further. Being a gay mom to a special needs child blows all preconceived perspective out the window. I have days of absolute joy and content amongst the stress and chaos. I also have days of bitterness and jealousy. The difference in the days seems to depend on sleep, friends, family, and the next "thing" we get to deal with. In general I have learned 10 things from my first 17 months as a mother.

10. Appearances can be deceiving. A smile slapped on my face doesn't mean nothing is bothering me. My daughter looking "normal" doesn't change how many things are not normal. Us living in a house and paying all our bills and having two cars does not mean that we can afford the insane prices for medical care (even if we traded down for shoes to walk everywhere with and a cardboard box to live in we still couldnt afford it). Just because my friends look like they have everything; healthy kid, easy conception of their second or third or forth, money to go on nice vacations, etc doesn't mean they have it easy.

9. Asking for help is essential. In the south we don't learn to ask for help we learn to offer help when we feel like someone needs it. I remember as a kid taking meals to neighbors or teacher friends of my moms because "they are having a tough time". I remember in college friends coming over to help me paint and move in to a new place and all of that without me asking...they just knew I was moving and offered to help. I'm new to the concept that you must ASK for help. That idea seems so demoralizing to me but I'm trying...and not for me. If I were asking for me it would be totally different things to help with like dinner and fun stuff like that. Instead its money for my baby so we can buy her medical stuff without having to put it off because we can't afford it.

8. Specialists are there to scare you or discredit you. Almost every specialist we have seen has done one of two things. They've either scared us half to death with the "possibilities" of this condition or that or they've completely blown us off because "she's so cute". Seriously I got to the point that I walked in and said yes I know she's cute can we move beyond that now. *Note* we did have one neurologist in St Louis make us feel amazing, however we did have to drive 4.5 hours to see the man.

7. Stopping for caffeine and chocolate after a huge appointment is essential. I'm not talking shots at the pediatrician (which I honestly used to call a "huge appointment"). I'm talking after hearing from the neurologist that your baby's brain cells didn't migrate properly or that she has epilepsy or that pudding is going into her airway or that she may have some obscure horrible genetic disorder that's only seen in .0001% of the population or the appointment that says your baby is going to surgery in just two days for a tube to help feed and hydrate her. Those are huge appointments. Those require a little caffeine and chocolate.

6. Milestones are a crock and a half. Milestones for infants are stupid. Sometime in their first 6 months they should do this or that. Well are they delayed if they do it at 7 months...of course not because there is a caveat that says +/- 3 months. I wish babycenter would not send out the emails saying your child is 43 weeks and should be doing this and that. My advice IGNORE milestone charts until they've missed the milestone by more than 6 months.

5. Figure out who to tell and who not to tell. The last thing you want to hear when you've just been told something major and you share it with someone else is that they don't agree or you are being too sensitive. Find people that will cheer you on, hug you, and pick you up. Ignore people that judge or second guess you in matters dealing with YOUR child. It's hard enough as it is to walk into a test, find out something major is wrong and that it requires surgery within a week ... oh and the surgery doesn't actually help the problem is just bypasses it.

4. Take time every single day to acknowledge all of the wonderful parts of your child and your being their mother. My kid is awesome. She is courageous and so darn cute. She can walk independently. She loves food. She plays well. She loves on her toys. She "reads" books. She gives open mouth kisses. She is starting to talk but has always communicated. She carries a purse. She puckers up for chapstick. She sits still for her nails to be painted. She is absolutely hilarious! She is well TODAY. She can walk unbraced RIGHT NOW. She is not in visible pain RIGHT NOW. She is playing by herself RIGHT NOW.

3. Don't be afraid to fight like hell, but also remember that sometimes patience and persistence are better tools. Fight for your family. Fight for your kid. Fight for your friends. Fight for your friends' kids. Know when to question a doctor. Know when to ignore a resident. Know when to demand attention. Know what information to give out and what information to withhold. Know the system. Through the battle to get Delaney the attention and care she needs Jess and I have learned the hard way what to disclose and what not to to which doctor because it changes!. We've learned when and how to be persistent. We've learned when to go around a doctor and see another one. We've also learned to research what tests are for and what possible outcomes are so when they throw out tube placement directly after a test you don't go completely nuts!

2. Find a friend or two that "gets it". I found my biffer on babycenter. Our daughters could be twins born at different times. Every. single. thing. is. the. same. They even look alike. But aside from them, K and I are also very similar. We get each other. We fight for the other. We offer advice and comfort. We put each other in check when necessary. We know when to discuss a topic and we know when to distract from a topic. We obsess and research. Together.

1. Marry a spouse that is amazing. Make sure that person is willing to not only going through all the good times and the slightly bad times, but is also willing to go through the awful and terrible and scary and painful times. My wife does that. We are not perfect. We fight and argue. We cry and scream. But through it all she is the love of my life. She is the most beautiful woman I know. She is caring beyond measure. She gets me and picks on me. She gives me long hugs when I need them. She lets me freak out. She is the biggest reason I'm not in the looney bin after the journey we've been on for the past 17 months. I love my wife and could not even imagine someone better to walk beside me than her.

While I was up for an hour and a half with Delaney last night while she screamed in pain (incision, gas, not sure) I thought about these things. I thought about the lessons I've learned. Whether your life is exactly as you planned or you've taken a little detour from the path of ideal to the path of "this works too" enjoy the journey...learn the lessons you are meant to learn. Celebrate triumphs, recognize struggles, and always surround yourself with positive (people, ideas, things) because otherwise you will go NUTS.

G-tube Update

2010-06-30T09:51:00.002-05:00

I am sorry I haven't posted more pictures. I promise they will come this week it's just been kind of nuts around here (as per the usual). She is doing great with her gt feedings. She's a happy little toddler.

The big girls are in vacation bible school this week.

Thanks to our fundraisers we were able to get Delaney a special stroller that helps support her better.

We are trying to return the kindness by donating left over baked goods to a friend's fundraiser during VBS and making dinner for another friend and writing out thank you notes. We appreciate everyone...everyone...

Oh and I"ve gotten all the girls lesson plans written out from August to Thanksgiving. :) It looks like it's going to be a super fun filled learning school year!

G Tube Surgery (Post-Op Shots)

2010-06-25T07:10:00.003-05:00

Yesterday we checked into the hospital and had to wait hours before her surgery could begin. They took her back to the OR and we waited. Waiting was the theme of the day. About 30-45 minutes after they took our darling girl to the OR I was paged to a room to receive a call. The call was from an OR nurse letting me know things did not go as planned and that instead of doing it all laproscopically they had to open up her belly. Talk about scaring the crap out of a parent. She couldn't offer any more than that simply and terrifying message. Then we waited. Again. Finally 30 minutes later the doctor came down to speak to us. He explained that the reason he had to open her belly up was because he could not correctly visualize the tube placement once they began blowing up the balloon meant to hold the tube in place. He said he'd never had change up the procedure due to that reason before but he felt more safe just opening her up and inserting a bard button (way more traumatic and painful to change out) temporarily. We were thankful he took the safest route for our baby girl but were still just aching to see her and hold her and KNOW she was okay. An hour later we were paged to be reunited with Delaney. She was sleeping and her discomfort seemed to be very well controlled on pain medication. We waited in an observation room for two hours and then were moved to the floor.

The night was horrible. She was in so much pain and she was letting us know. She cried and screamed and whimpered. She desated and went apeanic and her resps went down to 10 more than once. She was definitely struggling. Finally around 5am they were able to get ahead of her pain and she's been sleeping for 2.5 hours. Bless that child.

G Tube Surgery (Pre-Op Shots)

2010-06-25T07:04:00.003-05:00

Her surgery was scheduled for 11-1130. I breastfed her at 630 (which I was told was prefectly acceptable). When we checked in they said that after 12 months breastmilk is considered a solid and not a "clear" so surgery would have to wait until at least 1230. It was a LONG morning of waiting.

G Tube Surgery (Before Belly Shots)

2010-06-25T07:00:00.002-05:00

Call us crazy just Jess and I sat around and rubbed on her tummy and took pictures of it and kissed it because it will never again be that perfect untouched baby tummy. We mourned her old tummy in a way...her skin that had no scars.

Pre-Op Appointment

2010-06-22T14:01:00.006-05:00

During the surgery consult they showed us what the Mic-Key button would look like and how it would be put in. They also let Delaney play with a baby Mic-Key button doll. This appointment went really well. We even talked about Delaney's need for oxygen in the car and at night.

The upper gi was completely traumatic. They strapped her to a board. Turned her on her side and tried to get her to drink barium from a bottle. She wouldn't take the bottle because she was livid. They proceeded to take a syringe and squirt it in her mouth. Not only was it nectar thick and room temperate (and we told them five times she required chilled syrup) but they were squirting so much in at a time that she was starting to gurgle and choke. Poor poor baby...

The anes. appointment was very frustrating and annoying. The end result however was the papers were signed, risks were assessed, and we got the tentative go ahead for surgery on Thursday.

We love our friends

2010-06-22T13:20:00.002-05:00

M, P, and T (and soon to be H) watched Charlotte and Julia while we were at the hospital with Delaney. We are so thankful to have friends that can step in and watch the big girls or bring us food to the hospital or bring us dinner at home or stalking the blog to find out what's going on. M took all the girls to chuck e cheese, they watched a movie and colored, they enjoyed ice cream and dress up. I'm pretty sure they had a great time!

Jess

2010-06-21T10:53:00.002-05:00

Jess turned another year older this weekend...here are a few of the reasons I'm really glad she was born so she could be in my life.

1. I love her dearly

2. She's a great mom

3. She literally saves lives on a daily basis...the smallest of lives

4. She makes some really good enchiladas

5. She is hilarious and understand why I don't always get humor

6. She is patient and kind and allows for my quirks

7. She loves to travel

8. She isn't afraid to be part of the good, bad, and ugly of life

9. She loves music

10. She has a beautiful singing voice

11. She's been pregnant, given birth, and breastfed before...so she gets it

12. She's older than me :)

13. She feels the calling to dance in our living room, at the table, in the car, through the kitchen, and even in the yard sometimes...

14. She's absolutely perfect for me

15. Even if she doesn't want to...she listens...and listens well

16. She makes some darn good french toast

17. She exposes me to "culture" through plays, indie movies, and "weird" music

18. She cares about my best friend and her daughter as much as I do

19. She constantly emails/texts/calls to find out every detail of the day/appointment/event if she's at work and has to miss it

20. She cries...in front of me

21. She likes to take naps

22. She's super serious and hard nosed when it counts

23. She makes a really good version of lasagna

24. She enjoys my cooking

25. She loves diet coke

26. She giggles when I kiss her

27. We have inside jokes that come from countless hours of hysterically laughing

28. She devotes her entire self to others... some times to a fault

29. She is passionate about acceptance

30. She raises our kids with passion, appreciation, acceptance, and love.

31. She likes a lot of the same shows on tv that I like

32. She has taught our one year old to pucker up for chapstick

33. She loves me just the way I need to be loved...

34. She just rocks!

Readers and Lurkers

2010-06-21T10:34:00.002-05:00

Okay it's that time when I find out who is reading...all you have to respond with is "me" but I'd like to know how many people are reading my blog and how many of you I "know". I post some really sensitive information on here and would like to know who all is out there...

Sooooo come out come out where ever you are!

Afternoon the Gma and Papa

2010-06-20T17:40:00.002-05:00

Talking to Grandma

Stealing Papa's chair

Papa trying to get his seat back

Sharing the seat

D sitting in the rocking chair Jess got on her 2nd birthday

Swallow Study

2010-06-18T18:47:00.002-05:00

Didn't turn out well....

More life changing news...

But we are a strong family...she is a strong girl. We will get through.

Occupational Therapy

2010-06-17T16:32:00.001-05:00

I shared her food journal. She's not concerned about her output as much as the nurtition going in. She is referring us to a Nutritionist. We will see them in 2 weeks.

She is concerned that on "good days" she still isn't getting enough calories. And on "bad days" she's getting next to no calories. She suggested that we try Pediasure just to get nutrition in. She thinks that we are in a vicious cycle of oxigenation, nutrition, mobility.

She brought up that she didn't think an NG would be a very good option for Delaney because she would constantly rip it out so instead of fighting her to eat we'd be fighting her to eat and fighting her to keep the tube in. She said that she thinks a GT would allow us all to have a more "normal" life. She thinks it would be temporary because we could reteach her stomach what "full" feels like while feeding her by mouth so she starts to get the connection of what she should feel like after eating. She thinks by reteaching her body the correct signals it will help her brain do it correctly by itself without the tube.

It's a lot to digest because even just a few weeks ago I was in tears at the mere mention of a tube being placed in my daughter. Now I just want us all to have a more normal life. Our life right now is focused on how to keep Delaney in her little bubble (our living room) so that she's more likely to eat and drink and stay healthy. I want to be able to go other places without fear that she's not going to eat, drink, or she's going to catch something that lands us back in the hospital.

Thank you!!!

2010-06-16T14:31:00.002-05:00

I want to personally thank all of you who have helped with this fundraising effort!!! You have all been amazingly supportive and wonderful and I can't thank you enough. Stage one (the website) was a HUGE success (over $1200!) but it is over and now we're moving on to stage two -the yard/bake sale. The sale starts next week so we're full speed ahead getting ready for the sale. We are still looking for donations to sell, offers to help and make baked goods to sell. We will need help on Friday, Saturday and Sunday working the sale as well as setting up and putting away in the afternoon. We also need help Thurs evening getting everything ready for Friday morning. Every little bit helps! Please respond here if you can help at all.

There's also a stage three to this fundraising effort. We will keep the DONATE paypal button at the top of this blog so that if you wanted to make a monetary donation at any time you can. If (more realistically WHEN) another big push does come up for something specific we need I'm sure we'll have another online fundraiser like we did this time.

We feel so blessed to have so many people in our life that love and care for us and our daughter. We never knew how much people we had behind us! :)

New Best Friend

2010-06-15T19:10:00.003-05:00

Delaney got a package in today...It was from a really awesome friend we've never met...they had shirts for us and another family and this "ugly doll". Delaney insisted on napping with the doll and then taking the doll to the grocery store. Thanks T, K, L, and soon to be S.

Paypal and Fundraiser

2010-06-14T13:06:00.003-05:00

We are keeping the paypal up on our blog for anyone that feels compelled to help throughout the year.

Our fundraiser was a HUGE success. Thanks to ALL of you!!! Thank you. We got her a new carseat that supports her little body a lot better. We are also going to get her a pulse ox, portable nebulizer, her prescriptions that have been sitting at the pharmacy that we can't afford to pick up, and a few more cups that she can drink syrup thick liquids out of. Thanks to all of you we can finally do these things.

One day left

2010-06-13T11:00:00.000-05:00

Our fundraiser for Delaney ends tomorrow....

Pedi follow up from hospital

2010-06-12T10:39:00.001-05:00

They checked her pulse ox. It was 92.
They gave her a new asthma action plan.
We were told she was certain that by 3(used to be 2) she will grow out of all of her issues.

Bake Sale Needs

2010-06-12T08:46:00.002-05:00

Here is what we need for the bake sale that we are having in conjunction with the garage sale...

1. Lemonade mix
2. Diet Coke
3. Water
4. Sprite
5. Cookies (all kinds EXCEPT ones with peanut product Delaney is highly allergic)
6. Brownies
7. Muffins
8. Baking goods supplies so we can bake them ourselves
9. Sandwich bags
10. Plastic Wrap
11. Posterboard (bright colors)
12. Places to put our flyers to advertise the benefit!

If you can help out please email me at kathybailey@gmail.com or find me on facebook. We need all unprepared supplies by Monday June 21st and all cooked supplies by Thursday June 24th.

Thanks again for ALL the help everyone!!!

Don't you have insurance?!

2010-06-11T08:52:00.002-05:00

My wife wrote this note on facebook and I thought I'd share it here on the blog. My wife is truly amazing. I sometimes take for granted how amazing she is. She works so hard for us (it wouldn't work for me to also work because Delaney can't be in a normal daycare and she's so sick and has so many appointments I'd constant miss work anyway). She puts up with so much stress. She pretty easily makes ends meet without medical stuff...she is such a success in my eyes. She even makes it work with medical stuff...and for the most part hides the stress of that task. All I can say is she is amazing...and I am SO blessed that she's MY wife! :)

Jess' note

Okay so I haven't actually had anyone question why we're in the financial situation we're in regarding Delaney but I know some people are thinking it so I thought I'd explain what I've learned so far about our lovely health care system and how well "good" health insurance works.

DEDUCTIBLE
I have to carry the family plan (duh) and I have to have the premium one in order to have them cover 90% of most stuff so my deductible is $2400. That means I have to pay out of my pocket $2400 for every single thing until I hit that magic number. Once I hit $2400 they cover 90% of most things. I'm always very relieved when this happens! *usually around 2 months after the plan year starts in July*

OUT OF POCKET MAX
For the plan I carry there's an out of pocket maximum. So after hitting $2400 I only pay 10% out of pocket until I hit the magic number of $4000. Yeah so I ALWAYS pay $4000 out of pocket. Every single year. Usually before Thanksgiving. OUCH!

Once I hit my out of pocket maximum my out of pocket expenses don't just magically end. That's because that's just for the medical. I'm still paying co-insurance on all the meds and dental and vision (FYI when babies wear glasses they need a new pair more than once a year because they GROW!). ON TOP of the $4000 I've had to shell out from July - Nov.

It also doesn't take in to account all the stuff that insurance doesn't touch but are still necessary. D can't be in the $70 Walmart carseat because it doesn't provide enough support for her floppy little self. She needs the big mama jama that costs about $100 more than that. She also wears braces on her legs so that means that she needs special socks (they do not make knee socks for kids that have legs this short!) and then special shoes to go over the braces (size 5 EXTRA WIDE?). Every single little thing for this kiddo has to be "special." Special apparently means really expensive. She also can't ride in a stoller because they don't provide enough support. They make ones that provide extra support but they're normally $300-400 so we don't exactly have one. We're just glad she's still little enough to be carried.

So how does one income pay for all this? Not very well apparently. My base pay with my normal three 12 hour shifts a week is plenty to pay for the bills I have but when you add $5-7k a year to it, things get a little tight. So in order to off set this I've been working four 12 hour shifts a week most weeks in order to keep us out of bankruptcy. It wears on ya after a while. I miss my kids. I miss my wife. I wish I could help more at home. It's hard.

Sooooo there's my explanation of why this fundraiser came to be. I know no one asked but I'm the type of fiercely independent person that felt the need to explain myself. I do not enjoy asking for help. It makes my skin crawl. It makes me feel like crap. But I have to. I'm doing my very best and it's still not been good enough. My wish is that Delaney's medical expenses will eventually slow down and things will change for the better. Until then I have to ask for help.

And you've delivered! Kathy and I have been so overwhelmed by the outpouring of support for us and our family. We feel so blessed to have all of you in our life. Our hearts are so full and it's so nice to know that we had this huge village of people supporting us that we didn't even know were there. I guess that's what you find when you do finally ask for help. :)

Best Friends

2010-06-10T14:34:00.002-05:00

As we started our journey to having children Jess and I dreamed of finding other gay families with children. We wanted the support for us...to walk the path of an alternative family. We did this through fertility friend and blogs. We connected with friends through the internet. That community has come in VERY handy through our time of trying to get pregnant, having a miscarriage, losing our twin, the birth of delaney, her first hospital stay, and every single problem and triumph since then. These women have offered prayers, services, food, money, love, and even some tshirts :) The embrace that we feel from this group of lesbian moms and moms-to-be is unreal.

We have a few friends in person too and our friends are the first to contact us with prayers with we are struggling and cheer for us when we are celebrating. They have attended our baby shower, birthday parties, house warming parties, soccer games, play dates, and dinners. These people (and you know who you are) are so vital in our emotional health.

Family sends love and support always. They send care packages, make uplifting phone calls, entertain the big girls while D is at appointments or in the hospital, help with food and gas for far off appointments, and they love our kid.

And then...then there is this little girl...we'll call her P. And her mom..we'll call her K. This little girl is probably the BIGGEST support we have found in everything to do with Delaney. From milestones to specialists to hospitals to phone calls and skyping. She will be 4 in August. She is simply amazing. She is MY daughter 2.5 years from now. She and Delaney literally share every single symptoms, bad day, struggle, triumph, smile, blonde hair, hilarious personality, loving nature, and inner fight. I have never felt more of a need for one of our children to find a friend than I have with Delaney. I want her to know that her being different makes her special and not weird. I want her to know she isn't alone. I want her to know someone that TRULY understands how she feels. For Jess and I, I think it's been a life changing experience to have another parent set that is going through fighting all the same battles. We can help one another, talk to one another, laugh and cry with one another. I read books to P on skype almost every day (except when one kid or the other is at an appointment or in the hospital) and she reads books to me. We have dance parties with D and P listening to music and moving around. We have late night chats when P is feeling sick or sad or when D is up late wheezing or with fever. We talk about how P feels different but it's okay because D is too. We have talked about being a princess and P even gives advice on how to help Delaney ("those tubes make your nose itchy so make sure you scratch her nose sometimes"). This family and this little girl were sent to meet up with our path by God...there is no other explanation. K and P are vital to our family and we all love their whole family very much.

So thank you...our support group. Thank you for the phone calls, the prayers, the time, the thoughts, the fun playdates, the skyping, and the donations. Seeing how many people love our little girl like we do is so beyond moving. You will honestly never know what you mean to our family...

Home

2010-06-09T18:37:00.003-05:00

They discharged us. No plan, no monitoring, no interventions. Same asthma action plan that has not worked in the past which they re did three different times because they kept getting confused on the respiratory therapists instructions and the stupid doctors instructions. We are stuck now buying her sleep monitoring equipment out of pocket because these stupid doctors don't want to handle it and they are passing it to our pedi who wants a specialist to handle it and when you ask the specialists they want the pedi to handle it. All the while here we are standing and waiting.

Delaney's Fundraising Page

2010-06-09T11:45:00.003-05:00

We have had so many blessed angels amongst us here on earth...giving prayers and donations. A few family/friends asked me to repost the link. Since the hospital server is not letting me access facebook right now I thought I would post it on here. We ask you pray, donate, or pass it along. Thanks for ALL of your support. It helps us in times like these where we are scared and tired and needing some uplifting.

www.giveforward.org/delaneylower

You can also donate to paypal on the side of our blog. Paypal can even do money exchanges from foreign currency to US Dollars. In case anyone needs that feature lol.

Once again THANK YOU for all of your prayers. They are getting to us!!

Still in the hospital (day 2 posted on day 3)

2010-06-09T09:26:00.006-05:00

Since my last update Delaney still requires oxygen while sleeping. She is desating and her heart rate is dropping into the 30s while sleeping as well. She is doing pretty well during the day. We had a visit from the hospital chaplain yesterday. She prayed with us and brought a hand knitted shawl for Delaney. We have also had a visit from Grandma Belinda each night and Grandpa Mike came yesterday with the big girls. Tomorrow Jessica goes back to work. The girls will be here with me in the hospital. We have a new very detailed asthma action plan. We are awaiting PT/OT/Rehab to come up with a better sleeping solution.

Er Baby

Sleeping angel

Bath in a bucket

Ready for bed

Once again with the oxygen

Delaney gets hospitalized

2010-06-08T07:35:00.004-05:00

To make a LONG story very short...Friday she started coughing. Saturday started the fever. Sunday her cough/wheeze/rattling got worse and the fever remained high. Sunday night we took her to the ER. One breathing treatment, chest xray, and lab draw later we were sent home. Monday morning we went to the Pediatrician. Her pulse ox was 87 and he sent us home. After long dicussions with Jess and my best friend I decided to just take her to the ER. From the ER we were almost immediately admitted to the hospital. She was put on oxygen and given a few breathing treatments. Even with all of that it was tough to get her pulse ox above 95. So here we are in room 5711....waiting to find out what happens...

New Carseat

2010-06-05T13:29:00.005-05:00

This is the old carseat

This is the new carseat

Thanks to generous donations we can finally afford to get Delaney a new carseat. She has hypotonia which means her muscles are weak. She also has a connective tissue disorder which makes her joints really lax. These two combined present a huge problem when dealing with seating (carseat, high chair, etc). When her Gramme bought her first one we were really unaware of her issues and just bought a pretty good very cute seat. Over time we've been advised that prolonged sitting in that slouch/leaning position can cause issues with her spine. We have heard great things about the Graco My Ride 65 from other parents with special needs kids so that's what we got. We will sell her old carseat at our benefit garage sale at the end of the month.

Delaney's Mid Sleep Breathing Treatment

2010-06-05T09:38:00.000-05:00

Last night Delaney was wheezing and coughing before bed and fell asleep before we could give her a breathing treatment so we took Aunt Kate's advice and gave her a treatment after she fell asleep.

Occupational Therapy

2010-06-03T13:36:00.005-05:00

Today we practiced in her OPM(swallow study) chair again. She did great!

Then we played with toys and the swing. We talked about Delaney leaning in her carseat. She was not very helpful at all with that topic. We also talked about her seating positions in her stroller. She once again was not helpful with this situation. Then we talked about what might happen after the OPM. This is when I completely lost it and started crying. She explained the potential of NG tube placement after the OPM. She also explained the process to get a g tube. And then the most devastating part was that she explained they may ask me to discontinue breast feeding immediately following the test in two weeks. After talking to Jess I am not sure how I feel about that particular statement.

Just thought I would keep everyone updated on some of her stuff.

Generosity

2010-06-03T12:31:00.002-05:00

The Generosity of people came to an all time high yesterday when two wonderful people donated to Delaney's Angel Page. Lydina is a woman we met through our journey of trying to get pregnant with Delaney. Her son was born with a heart defect and a lot of people gathered around them with prayers and food and support. We are so grateful for her prayers, love, and support. We also had an anonymous donor yesterday. HOLY COW is all I can say. I wish I knew who it was so I can hug them very very tightly but since I don't I will just post a blog saying THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU.

Delaney gets her walker

2010-06-02T10:50:00.001-05:00

Delaney got her walker yesterday. She has been using one in therapy on and off for several months so it is nice to finally have one of her own. She took to it right away. We went to Target and she did not walk away from it at all. We noticed that while using the walker she slows down enough to actually notice her true gait pattern. Talk about WOW! When not in her walker she tries to walk super fast to stay balanced and moving. We took a picture and a couple short videos of her first official day with her walker.

Leawood Park

2010-06-01T15:25:00.006-05:00

Delaney's Fundraising Page

2010-06-01T15:23:00.003-05:00

http://www.giveforward.org/delaneylower/

So many have asked how they can help so we finally decided to start a page where anyone can donate if they'd like. Don't feel pressured, it's just for those that have asked in the past or are interested now. We know you ALL love her! And that counts too!!!

It's just hard to fumble and not know how to answer someone when they ask if they can help. It's not like I can say well now she needs a specialized carseat or a walker could you run out and get her one of those?! LOL :) So this seemed to be the best solution for us. I hope it helps anyone that was interested in helping. Every dime counts.

We got a family pool

2010-05-31T14:53:00.002-05:00

we got a 10ftx6ftx2ft (it seems taller than 2ft) pool. Delaney and Julia LOVE it. I'm sure there will be lots of pictures through the summer in this pool.

Charlotte in As You Like It 30

2010-05-31T13:33:00.009-05:00

Delaney gets AFOs

2010-05-31T13:25:00.002-05:00

Friday May 28th Delaney got her DAFO 3.5s. She let him fit her with no crying or fussing. She didn't mind the different feel of the bigger braces until it came time to walk. They didn't allow her to hyperextend her knees as much and she literally fell with every few steps the first day. She still falls quite a bit now but is getting better. We don't leave them on as much as we did her smaller braces because of the heat and the hassel.

Benefit Garage Sale

2010-05-31T09:29:00.003-05:00

Jess and I were looking at exactly how much we've spent for Delaney's stuff. This includes deductible, co-insurance, medication, bracing, adaptive equipment, gas, trips to visit far off doctors, special socks to go under braces, special shoes to go over braces, special creams, special soaps, special toys, and now we are needing to get a different carseat because of tone issues in her current seat. The amount that we've spent over the last 8-9 months for medical stuff that our insurance didn't cover is nearly $5,000! That doesn't even include the other stuff we've had to get. We have also met another little girl through a CP board who lives in another state. She has all the exact same issues occurring at all the same times. We've love for the two girls to meet sometime to know they aren't alone. Delaney sure loves skyping her.

We have decided to have a benefit garage sale and bake sale. We are asking our friends and family for donations of "stuff" that we could sell at the garage sale. We are also asking for baked goods or baked goods supplies that we can bake ourselves. Finally if none of those sound like something you or your family could do we'd love to have guests at our garage sale to make purchases and say hello!

Our garage sale will be the last weekend in June. If you can make a donation of any kind please email me (if you know it) or post a comment and I will get back to you. We can come pick stuff up or you can drop stuff off.

After the garage sale anything that does not sell will either be donated to the Goodwill or a local shelter/food pantry.

St Louis Children's day 3

2010-05-27T07:39:00.003-05:00

Delaney woke up this morning very grumpy.

She only wanted mommy!

It was very sad!

Once she woke up a little and adjusted to the light she started feeling a lot better.

Then she became her silly self!

And for those of you who have never met her in person, here is her "talking" this morning.