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

"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

Check out this link!


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

What is Mitochondrial Disease

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

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

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

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

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!!

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

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.