Monday, February 21, 2011

Music for Monday

The Servant Song...sung at our wedding...

Will you let me be your servant

Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too.

We are pilgrims on a journey.
We are friends upon the road.
We are here to help each other
Walk the mile and bear the load.

I will hold the Christ-light for you
In the night time of your fear.
I will hold my hand out to you;
Speak the peace you long to hear.

I will weep when you are weeping.
When you laugh, I'll laugh with you.
I will share your joy and sorrow
Till we've seen this journey through.

(Repeat Verse #1)

Monday, February 14, 2011

Share the Love for Quinn: Happy Valentine's Day

A Valentine's Day Message from Quinn...

Happy Valentine's Day to one and all...thanks for all the love and kindness you've shown towards us as we've shared some of our journey. We deeply appreciate it! Sharing everyday via facebook has ended and the family blog continues. We will still share from time to time what is happening with Quinn as we deal with the challenge of cystic fibrosis. You can still donate from now until May to support the research that helps Quinn and others who have CF. Thanks for sharing the love for Quinn...

His peace to you,
Meredith

Music for Monday: Peace by Rich Mullins

Though we're strangers, still I love you
I love you more than your mask
And you know you have to trust this to be true
And I know that's much to ask
But lay down your fears, come and join this feast
He has called us here, you and me

And may peace rain down from Heaven
Like little pieces of the sky
Little keepers of the promise
Falling on these souls
This drought has dried
In His Blood and in His Body
In the Bread and in this Wine

Peace to you
Peace of Christ to you

And though I love you, still we're strangers
Prisoners in these lonely hearts
And though our blindness separates us
Still His light shines in the dark
And His outstretched arms
are still strong enough to reach
Behind these prison bars to set us free

So may peace rain down from Heaven
Like little pieces of the sky
Little keepers of the promise
Falling on these souls the drought has dried
In His Blood and in His Body
In this Bread and in this Wine

Peace to you
Peace of Christ to you

And may peace rain down from Heaven
Like little pieces of the sky
Like those little keepers of the promise
Falling on these souls the draught has dried
In His Blood and in His Body
In the Bread and in this Wine

Peace to you
Peace of Christ to you
Peace to you
Peace of Christ to you

Friday, February 11, 2011

Share the Love for Quinn: New Normal


This morning, I heard Sela talking in her crib as Ryan got ready to head to work. I slowly got out of bed and headed to Sela's room to talk to her. She was eager to get "up" and "out" (Sela's orders) of her room and we walked together to the kitchen where I turned the coffee pot on. The sounds of brewing began and Quinn's face appeared around the corner as he walked into the kitchen. "Hi Mom." Sela was ecstatic to see Quinn. Hugs were given. Hair was ruffled. Discussions were had about taking a bath. Quinn tried to negotiate "a rinse" but Mom held firm to full bath, hair wash included. And Sela wanted her milk and "Da-da". This is normal.

I think about getting Quinn's medication and what time we need to get breathing treatments and CPT started. I think about what each person needs to eat this morning--what will pack a caloric punch for Quinn, be yummy and nutritious for Sela, and that I will remember to eat something besides drinking my coffee. Is Quinn feeling OK. Any signs of cold or sniffles or coughing. Any medications to refill? Am I making sure that Sela gets the attention she needs?

This is our normal too.

Sometimes this journey feels isolating. Like driving with everyone else on the highway but always taking a detour.


Our normal continues to evolve. Things that felt so odd and uncomfortable originally now are a part of our daily routine. We are making a conscious effort to be consistent with Quinn's care without letting it be the focus of his life or our parenting. I'm a task person and completing the tasks surrounding Quinn's care have dominated my thoughts at times. I'm learning that I can help him complete those tasks and still create space for playing, having a fun adventure, and experiencing the rest of life.

There are things that I am thankful for. When Quinn turned one I was able to think back on all the things and people I was thankful for in this post. There are new things that I am able to add to that list today:

Quinn's health--things are not perfect but he is doing SO WELL! I am thankful for his energy, life, curiosity, hugs, and all round "Quinn-ness".

Sela's health--when we had peace about having a second child, it wasn't without questions. Because CF is a genetic disease, there was a one in four possibility that Sela would have CF too. She does not have CF, praise the Lord! There is a 50% possibility that she is a carrier of the CF gene and a 25% possibility that she is not a carrier at all. She will never develop CF.

Our family--there are four of us doing life together and I am so grateful for Ryan and our two kids. Seriously.

The rest of our family--our kids have awesome grandparents, aunts, uncles, and cousins. What a gift to have amazing family!

Our friends--from our small group and beyond. Sharing the journey is so crucial. Speaking truth and love to one another. Laughing. Praying. Talking. Crying. Talking some more. Eating. So good.

People listening and reading--thank you for reading about Cystic Fibrosis and Quinn's journey. The comments and notes and donations to Team Win with Quinn have been awesome!

We will continue to raise money for Cystic Fibrosis research and in May we will walk in the Great Strides Walk. Team Win with Quinn will gather together in Salem to walk in support of those with CF and research for CF. It will be a good day to walk and remember that we are doing something to help Quinn and others with Cystic Fibrosis!

My blog will continue...a chance to write, talk about family, share about Quinn, things I love like organizing, reading, and living. The grand and the mundane. My word for 2011 is life-giving. How I spend my time, my thoughts, opportunities we say yes or no to, and experiences for Quinn and Sela. That we walk in confidence and hope and not fear. To choose what is life-giving.

And Quinn...thanks for sharing the love for Quinn.





Thursday, February 10, 2011

Share the Love for Quinn: An Extra Bellybutton

In September, as Quinn started preschool, we discovered that some of the kids were asking Quinn about his feeding tube. When he would raise his arms his little belly would peek out from under his shirt and you could see a little white button on his belly. Quinn wasn't totally comfortable talking to the kids about it so his teacher asked if I would come in and share about the "extra bellybutton".

I asked Quinn if he would help me teach the kids about his feeding tube and he was all about being in charge :) So together we talked to the kids about things we need to make us healthy. Things we use to do that...like tennis shoes, a band aid, glasses.

And for Quinn...a feeding tube.

We have a special teddy bear that has a feeding tube too that Quinn could show the group. Quinn showed the group his tube too but we also discussed that Quinn could say no if someone asked to see his tube. Good to think about the power of choice. It went well. I think that Quinn felt empowered to answer questions or say no if he was uncomfortable.



The feeding tube. Sigh. This has been quite a journey. Not everyone with Cystic Fibrosis needs a feeding tube but everyone with CF needs a LOT of calories. The short version of the Quinn/Calorie story is this:

Quinn spent the first 18 months of life with undiagnosed acid reflux. He was always throwing up his milk. He was never very interested in eating thought he always had a ton of energy. He had mild dysphagia (difficulty swallowing) which also complicated his eating issues. Even though we were finding as many ways as possible to increase his calories with what he would eat, it was never enough. Once Quinn got on reflux medication, things improved but never resulted in major caloric intake.

We've met with two food therapists, an occupational therapist, and seriously considered taking Quinn to two different food therapy clinics. I've read a number of articles on food issues and suggestions for improving food interest, volume eaten, and interaction with food.


Sigh. I love to eat. Ryan loves to eat. Sela loves to eat. Quinn does not. Thus, the feeding tube. While I cried and cried about this decision, our medical team highly recommended it and we really saw no other way to get Quinn the calories he needs. There is a HIGHLY significant correlation between nutritional health and lung health so experimenting with a lot with other methods was not a risk we wanted to take.



For me, the feeding tube felt like I had failed Quinn. I was his primary caregiver and I couldn't get him what he needed. I associated feeding tubes with people that were dying and could no longer eat. My anxiety was very high about the tube. It meant a surgery for Quinn. Not a thrilling prospect. But we decided it was the best decision for Quinn in the long run.

I think it has been the best decision. All of the drama around food GREATLY decreased. Knowing that he would get calories at night while he slept meant the tug of war around food and trying to get him to eat more could subside. He would eat what he could eat and then the night time feeding tube feed would supplement what he had already consumed.


So now, Quinn gets 850 calories at night of formula. When he goes to bed we get his pump set up, flush his tube with some water and then attach all the necessary cords. It typically runs from 8PM until 2AM or 3AM. I set my alarm for 2AM, turn off the pump, and disconnect the cords. From the start of the pump until the end of the feed, Quinn can't just get up and walk around. If he needs to get out of bed to use the bathroom then he has to call for us so we can pause the pump and disconnect him.

Sometimes the cords come detached from his tube...and then we just have a big formula mess all over Quinn and the bed. Or if Quinn coughs in the night, this can sometimes trigger him throwing up.

Quinn is resilient. He doesn't always love having to be connected to cords at night but he is SO cooperative and patient with us. He has figured out how to move around his bed, how to get comfortable to go to sleep, or tease us if we spill water on him while we're flushing his tube.

It is painful if the tube is pulled and it is uncomfortable to him when we have to replace the tube. But again, he is so resilient. While I wish Quinn would eat 2000 calories a day on his own, I'm thankful that a feeding tube is possible. It is helping him get the calories he needs and that is essential in this journey with CF.

If you would like to help Share the Love for Quinn you can donate to CF research with Team Win with Quinn.

Wednesday, February 9, 2011

Share the Love for Quinn: Shimmy and Shake


Quinn does something called Chest Percussion Therapy or CPT twice a day. CPT is a treatment that has been going on for years but research has helped determine the most effective ways for it to be done. The idea is that the vibrations of percussion or pounding and vibrating the body--specifically the lungs--helps to clear out mucus that plugs the airways.

For two years we've done this manually using little pink mallets after Quinn's breathing treatment. In November, our CF doctors recommended we add an additional breathing treatment to make two a day and that we purchase the "Smart Vest" for CPT. Instead of the little mallets, the machine acts as an air compressor shooting air in rapid bursts, through a tube, and into this special vest that the patient wears. It vibrates the body and you can set the machine for how rapid the air bursts are sent or how tight the vest is.

First, he uses an inhaler to open up the airways of his lungs. Second, he does a breathing treatment. In the morning, before school he does a breathing treatment for 11 minutes with an inhaled medicine that acts like little scissors cutting through blockage. After doing the breathing treatment, he straps on a red vest to do CPT--yes, he did go with the red vest as it was most like a firefighter. The first ten minutes is set at one level of rapid air intensity. After ten minutes the machine stops and Quinn coughs. Then we have another ten minutes of higher intensity pounding and we finish with Quinn coughing again. The coughing is to help clear out the mucus. The first session, from start to finish takes about 38 minutes.

During his second therapy session, he does the same steps with the inhaler and the breathing treatment but this time the medicine is a special saline solution and it takes about 17 minutes. Then on goes the red vest and CPT begins. It ends the same way with us telling Quinn to cough. This session takes about 45 minutes.

To help with each session, we let Quinn pick out a show to watch. The video below is 49 seconds long and gives you a little glimpse at what CPT looks like at our house. It is a noisy video because the CPT machine is very loud when it is on and the show is turned up louder. But it is real life and real life isn't quiet. Here is a sneak peek of how Quinn shimmies and shakes.


If you would like to help Share the Love for Quinn you can donate to CF research with Team Win with Quinn.

Tuesday, February 8, 2011

Share the Love for Quinn: Dollars and Sense


We've wanted to share a little bit about various aspects of having a family member with a chronic illness and one additional element in our household is that we have two chronic illnesses. Ryan is a Type 1 Diabetic. Diagnosed when he was 8, he has had years of taking shots of insulin and for the last 8 years he has had an insulin pump. Ryan has a unique take on living with a chronic illness and the changes that have happened over the years because of research and medicine. That is exciting! Both Ryan and Quinn need specific medications, medical equipment, doctors' appointments, and high quality self-care...and all of those things typically come with a price tag.

If you think about your family budget, you can see percentages that you attach to certain categories. Maybe 40% goes to housing payments, 10% goes to tithes or donations, maybe 20% goes to auto and gas, or 20% goes to school loans each month. However your budget breaks down, it is different from family to family.

For our family budget, 20% goes to medical expenses. We would say that we have good insurance. But everything is expensive! One medication we use during one of Quinn's breathing treatments is $5195.04 for a three month supply--we only pay a $70 co-pay. The enzymes, called Creon 12, which Quinn takes any time he is going to eat are $1559.27 for a one month supply and again we only pay the co-pay.

If we did not have insurance, as is sometimes the case for individuals with chronic illness, there is worry about how to pay for anything on top of the issue of already having the illness. The vest that Quinn recently got for his Chest Percussion Therapy session was over $14,000. Because of insurance we only paid $567. And still, 20% of our budget goes to medical expenses.


We work with six different pharmacies and two medical supply companies. We received shipments of supplies from UPS, FedEx, and a local delivery service multiple times each month. Ryan got a pair of shoes in the mail last week and I had assumed that the box was more medical supplies. At least the shoes were a fun treat! :) I've learned a lot about insurance and, overall, have had pretty good experiences with insurance agents. I've learned more about tax deductions and percentage of income and what you can actually deduct related to medical expenses.

On our journey I'm thankful for the jobs we've had, the insurance we've had, for the "benevolent benefactors" in our lives who have generously given to us from their own resources, and for opportunities we've had to receive excellent health care. My sense is that we have much to be thankful for--a warm house, food in the refrigerator, a hot shower, doctors within walking and driving distance, clean water, clean clothes--it is a luxury in the world to have your own washer and dryer, and medicine.

Sometimes I get tired of thinking about money and sending money to the various companies or hospitals.
While I wish we didn't have to spend any money on medical expenses, I am thankful that we have access to the medicine we need. And the research that is being done about CF is important and has already improved the quality of life for people with CF so much. And I believe that there will be more discoveries soon!

Please consider donating to Team Win with Quinn--all money goes towards research to find a cure for Cystic Fibrosis.

Monday, February 7, 2011

Share the Love for Quinn: Music for Monday


I chose to follow Jesus a long time ago. And I can't imagine going through some of the things that we've gone through without him. It hasn't been easy and that is with him. Faith and hope aren't portals through which you crawl into sunshine, sparkles, and fairy dust. Faith and hope are the little sparks of light in a dark cave.

In this journey with Quinn, I have been reminded on more than one occasion that everybody has something. Everybody has something that they have to work through, deal with, struggle with, even suffer through. When things have been hard we have needed people in our lives to remind us of what is true and hold out that spark of light in the dark.

We all need that in our lives. Real life isn't about the sparkles and the fairy dust. It is about family and community. About telling the truth and lifting one another up in prayer. It is about authenticity in suffering. It is about the faith and hope in Jesus Christ. These are some truths that we hold on to in this journey. Not because they've come easy...but because they are life and breath and real.

We are excited to share some more this week about Quinn and this journey with cystic fibrosis. And maybe you have a question about CF or something you've wondered but were afraid to ask, consider this an invitation to put it out there.

Consider donating to Team Win with Quinn as we raise money to further Cystic Fibrosis research.


You are God Alone
by Cynthia and Billy James Foote

You are not a God
Created by human hands
You are not a god
Dependent on any mortal man
You are not a god
In need of anything we can give
By Your plan, that’s just the way it is

CHORUS
You are God alone
From before time began
You were on Your throne
Your are God alone
And right now
In the good times and bad
You are on Your throne
You are God alone

You’re the only God
Whose power none can contend
You’re the only God
Whose name and praise will never end
You’re the only God
Who’s worthy of everything we can give
You are God
And that’s just the way it is

CHORUS

BRIDGE
Unchangeable
Unshakable
Unstoppable
That’s what You are

Friday, February 4, 2011

Share the Love for Quinn: An Interview with Quinn

An Interview with Quinn


Mom: What is Cystic Fibrosis?

Quinn: I don't know. Medicine.


Mom: What do you do with enzymes? Why do you take them?

Quinn: Eat them. Because they are my medicine.

Mom: What do we do with CPT (chest percussion therapy)?
Quinn: I breathe in and I go (pounds on his chest). My vest is pretty good.


Mom: What do we do with your tube?

Quinn: We put medicine in it and then I can eat more. It is really cool.


Mom: What is a healthy snack for you?

Quinn: Donut. Peanut Butter Cups. Larry-Boy Plunger O's (this is a fictitious cereal from Larry Boy and VeggieTales).


Mom: What do you think that God thinks about you?

Quinn: He is really happy about me. That is all I know about God. "A man looks on the outside but God looks on the inside" I Samuel 16:7 (I'm not kidding, he just quoted that to me...)


Mom: How do we show love to others?

Quinn: Like giving them kindness. That is all I know.

So, we may have some work to do on what he understands about Cystic Fibrosis but I'm thankful that he knows whose he is...

Consider donating to Team Win with Quinn as we raise money for CF research.

Thursday, February 3, 2011

Share the Love for Quinn: Expectant Living

I know of a woman who had four children during the 1940s and 1950s. Three boys and a girl. The three boys all had cystic fibrosis: two died as very young children and one died when he was 17. And his mom said his health caused him a miserable existence. So incredibly tragic.

Fast forward to 2011. It is a different experience to be born in this day and age and have cystic fibrosis yet the phrase "life expectancy" is still a part of our vocabulary. There is a twisted tension I've come to recognize when I consider "life expectancy". I hate that it is even part of our vocabulary. But it is. And it is because people with CF--my child with CF--has a shorter life expectancy than those without. The predicted median age of survival for someone with CF is in the mid-30's which is how old I am right now.

I am grateful that research has produced significant discoveries which have increased the quality of life and life expectancy. But I'll give you a peek into my brain and emotions: this Christmas there were some pajamas I was considering buying for Quinn and saving for next year.
And I chose not to buy them because I was afraid he wouldn't be here.
That he will die.
That I will have to plan his funeral.

That is a reoccurring fear for me that I've had since Quinn was born. I'm pushing myself to confront that fear by even sharing this in a "cyberspace" kind of way. Pushing myself to acknowledge that we live in 2011 and not the 1950's and that Quinn has his own unique journey.

I have two thoughts about "life expectancy":
1. Life is fatal. That probably sounds a little extreme but there is some irony in all of this talk about how many days we each will live. "Life Expectancy" is derived from the law of averages and that law may or may not fit. I do know that each one of us will die. Period. And that I have a deep conviction to teach Quinn about the realness of Heaven. And the love of God.

2. It isn't about years, it is about hopes. What do I expect out of life? To love family. To love friends. To follow Jesus. To love others. To laugh. To cry.

I want all of these things for Quinn. I want him to expect these things in life too and not worry about his days being longer or shorter than others. I want him to know that his life has purpose and meaning.

And that he lives each day to the fullest. Expectant Living.

Consider donating to Team Win with Quinn as we raise money to further Cystic Fibrosis research.

Wednesday, February 2, 2011

Sharing the Love For Quinn: A trip to the CF Clinic

February 1st was one of our four yearly check ups we do at Doernbecher Children's Hospital Cystic Fibrosis Clinic. We began coming to the clinic soon after Quinn was released from the NICU when he was a month old. The staff has been AMAZING and for two very freaked out new parents they were calm and honest and thoughtful and so helpful. They are passionate about helping kids with CF and have helped us navigate this journey.
Quinn gets all his vitals taken: 37 lbs 4.1 oz, 3 ft 4.95 inches. A pediatric pulmonologist talks with us about Quinn, asks Quinn questions, jokes with us, and then examines Quinn thoroughly. The big deal is listening to Quinn's lungs with a special high powered stethoscope. The doctor is listening for blockage in the lungs. The sooner we can catch something the better chance we have of treating it effectively and minimizing damage.


Quinn is in the 10% of kids that are diagnosed with Cystic Fibrosis because of intestinal blockage at birth. While it was a horrible experience to journey through those first weeks in the NICU, I can say that I am thankful that we have known from the very beginning about the kind of care Quinn needs.
Nurse Ben really should wear a cape because he is kind of a super hero in disguise. If we have questions about Quinn's health--a lingering cough, a weird bowel movement, a trip to the swimming pool, a question that I don't know who to ask--I call Ben. A few months ago Sela had a cold and I went into overdrive thinking about how to keep Sela and Quinn apart. Sibilings. Apart. Really? So I called Ben and told him I was feeling really anxious about keeping Quinn well and that I needed to hear the medical perspective on that concern. And he graciously obliged. When we are unsure of what direction to go, Nurse Ben always helps.

Quinn and Sela entertain each other in the exam room. You can do a lot with purple surgical gloves that can be blown up. Mini-balloons come in handy. Sela knows all about Quinn's therapies--she'll often pretend to pound on her own chest.
We see a social worker and the ever important nutritionist. While most nutritionists would talk about fruits, veggies, and cutting back on sweets, our nutritionist offers Quinn a choice of snacks: Oreos, Reese's Peanut Butter Cups, or fruit snacks. The more calories, fat, and protein the better. Quinn chose the Peanut Butter Cups and for him, that is a healthy snack. He ate three today.
It was a good visit. Aside from Quinn crying because of the throat culture which they do at each visit, things went well. No new sounds in his lungs and no major changes. We are adding a half a can to his g-tube feedings at night to get him some extra calories. It is hard for this kid to eat 1800 plus calories a day. We are always thankful for good visits. Our next one in May will involve chest x-rays of Quinn's lungs and blood draws. We might all need Peanut Butter Cups after that one.

Consider Sharing the Love for Quinn by donating to Team Win With Quinn

Sharing the Love For Quinn: What is CF?

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the mid-30s.

The Cystic Fibrosis Foundation

Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference (from http://www.cff.org/AboutCF/).

What does this mean for Quinn?

Quinn fights lung issues by doing two breathing treatments a day plus two sessions of chest percussion therapy. He takes enzymes any time he eats because his pancreas does not make the enzymes he needs to break down his food. He takes three additional vitamins at this point plus two Prevacid pills a day to block acid due to acid reflux. He needs to eat 1800 calories or more a day. He has a feeding tube we only use at night to help him get all those calories. He is the only kid I know who double checks his own bowel movement to see if there is oil in it. He knows to tell us because it is a sign of malabsorption. Any time he coughs we go on high alert in case it is an indicator of something more complex with his lungs. Using hand sanitizer is a habit we are all well-trained in.

These are a few ways that Quinn experiences Cystic Fibrosis. Every person's journey is different and their experience with the disease is different. If you would like to help Share the Love for Quinn you can donate to CF research with Team Win with Quinn.

Tuesday, February 1, 2011

Share the Love for Quinn

It has been four years and 10 months since Quinn was diagnosed with Cystic Fibrosis.

From our initial shock and fear when we discovered Quinn had blockage in his intestines, three surgeries, a month in the NICU, and confirmation that Quinn had the genetic markers for CF...

...until now...

We've mostly kept our experience and process close to our hearts. But we've made a decision to take a step out this year and share some more about this experience--this journey--of what life is like for Quinn and our family. We want to help educate others about Cystic Fibrosis and "Share the Love for Quinn" to help raise funds for research to find a cure for Cystic Fibrosis.

We are Team Win With Quinn and we are partnering with the Cystic Fibrosis Foundation Great Strides Campaign to raise money to fight this disease. We know there are many needs in the world right now but if you feel compelled to "Share the Love for Quinn" to donate $1 or one million dollars you can click on Team Win With Quinn and donate to our campaign to raise $5000.

From February 1st to Valentine's Day I'll be blogging about this journey--our latest CF clinic appointment, how we talk about CF with Quinn, the truths we've discovered about living with a chronic illness, how we use Quinn's feeding tube, and a whole lot more...

So "Share the Love for Quinn" and consider donating to a cause that will impact Quinn's life!