Thursday, February 14, 2013

Share the Love for Quinn 2013: Happy Valentine's Day!


Our final Share the Love for Quinn post this year...about a first kiss and a day in the life...

the last few days have been full between Ryan being sick, keeping Quinn going with treatments and the like, and then Sela came down with a fever yesterday. 24 hours later she is fever free and seems good to go, Quinn is a trooper, and Ryan is getting better. Last night, though, I just couldn't post anything.

But today, I can!


A First Kiss

If I tell you this story, you have to promise not to tease Quinn. Okay? 

If you don't promise then you have to skip down to the next part. Do you promise? 

Pinky swear? 

If you promised, you can hear this story.

I volunteer in Quinn's classroom each week and I've gotten to know most of the kids. One day I was meeting with kids individually and one of the little girls came out and sat down with me. 

She said, immediately,  "Quinn and Lucy kissed at recess." (names have been changed to protect the innocent but you already know Quinn so....) 

"Hmmmm..." I said. Thinking, thinking, thinking...I said to her, "Tell me more about that."

She gave me the play by play. Quinn, Quinn, Quinn...what was he thinking!?!?

After the little girl went back into her classroom I asked Quinn's teacher about this story...and she slowly said she had heard about that but wasn't sure what might happen. It sounded like the principal was going to respond to the two of them.

Sure enough, I had a phone call from the principal later in the afternoon. She told me about her conversation with Quinn and Lucy. Both of them kept saying they just couldn't talk about it. Then Quinn said maybe he could try to talk about it...but, no, he couldn't talk about it. The principal said...

"Did something happen at recess?" They couldn't talk about it.
"Something called kissing?" They still couldn't talk about it.
"You kissed each other at recess. That is inappropriate."

They were both very, very, very apologetic and they are both really sweet kids :) They were mortified that they had done something they weren't supposed to do.

Quinn said, "Lucy asked me to kiss her...and I couldn't tell her no."

The principal asked Lucy if she had anything to say about that and Lucy said, "Quinn is right. That is true."

I'm not sure if it was everything that they thought it might be but it prompted some really good conversations at home about kissing, friends, family, and life. When I picked up Quinn at school that afternoon and mentioned that we needed to talk...the hysterical tears were immediate. He survived...and he and Lucy are still friends. We'll see what happens on Valentine's Day today :)

If nothing else, we will eat heart-shaped pizzas and chocolate chip cookies...


What will tomorrow look like for Quinn? Here you go...
  • 6:50 AM Wake up, get dressed, head to living room to do first treatment.
  • 7:00 AM Use inhaler, then do nebulizer with saline solution for 17 minutes. 
  • 7:20 AM Do Chest Percussion Therapy (CPT) for 25 minutes or the new technique, PEP.
     Quinn wearing his new blue "police officer" therapy vest
  • 7:45 AM Breakfast...high fat, high protein, high sodium...Quinn takes four enzymes (pills that help his body break down fats and proteins)  and an adult Vitamin D pill...this usually looks like a big spoonful of Nutella and/or peanut butter, toast with lots of butter, and a combo of half and half, whole milk, and chocolate syrup.

  • 8:25 AM Head to school

  • 11:00 AM Go to school office to take four enzymes before lunch 

  • 11:10 AM Eat lunch...Quinn really doesn't like to eat so lunch at school is a challenge. The lunch time attendants know that Quinn's lunch might look different than other kids. I might send pepperoni and cheese sticks, Cheetohs, juice or chocolate milk, high fat crackers, or a chocolate bar. Quinn would rather head out to recess than eat so this is something we check in about a lot.

  • 3:10 PM Pick up Quinn from school

  • 3:30 PM Snack...Quinn asked if we could go get ice cream after school the other day. I went home, grabbed some applesauce for his enzymes, and we headed to a local ice cream shop. He branched out from chocolate and got cotton candy on a sugar cone. He took four enzymes in applesauce and then proceeded to eat all the ice cream and cone. It was terrific!

  • 4:00 PM or 4:30 PM Second treatment: Use inhaler, then do 17 minutes of saline and then about 7 minutes of Pulmozyme. The saline thins out mucus. The Pulmozyme acts like little scissors to cut through the blockage in Quinn's lungs. 

  • 5:00 PM Second session of Chest Percussion Therapy (CPT) or PEP. 
    Quinn using the PEP technique for therapy
  •  5:30 PM Finish up CPT or PEP

  • 5:30 or 6:00 PM Dinner...four enymes, a multivitamin, and a special vitamin mix of A,D,E, and K. Folks with CF need more of these vitamins. Another high fat, high calorie meal, high protein meal.

  • When Quinn is sick, we try to figure out how to fit two more sessions of CPT or PEP in and do another session of the nebulizer with saline.

  • One of the challenges with this treatment schedule is giving Quinn time by himself and time for him to choose some things for himself. I often feel like we are telling him what to do, when to stop something and start something else...I know he gets frustrated. 

  • At bedtime, Quinn has another four enzymes in applesauce, gets ready for bed, can read for a bit, and then we get his feeding tube hooked up for the night. He gets about 850 calories at night. We are doing this five nights a week at this point.

  • Everybody develops what is normal for them. This feels normal to us...you do the best you can wherever you're at.
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 $3000.

Tuesday, February 12, 2013

Share the Love for Quinn 2013: Whole


Quinn got a feeding tube when he was 2 years old. It was a journey to get to that point and I've shared about food, CF, and Quinn here

A bit before Quinn had his surgery, we were sitting on the floor in his room--a sweet 2 year old who was very verbal even then--and I tried to explain to him something about this surgery. How the doctors were going to help him so he could get enough food into his body. 
 How do you explain this to a 2 year old?

He asked me, "Mommy, am I broken?" 

I was completely caught off guard. 

In that moment, the only thing I could think to say was that we are all broken.
And that we all need Jesus. 

Our singer/songwriter friend Olivia Pothoff wrote an amazing song based on that conversation. You can hear a portion on iTunes (it is AWESOME) or you can read the lyrics here. It always ministers to me.

Whole

Verse 1:

Mother and son in conversation
Late in the eve before bed
Resilient with joy, a two-year old boy
Fights a disease
Prepares for surgery
Pre-Chorus:

He said, “Mama, tell me am I broken?
Mama, tell me am I broken?”


Chorus:

We’re all broken people
With all kinds of broken
Bodies and hearts and souls
We all need a Savior, we need a Healer
He’s the One who makes us whole


Verse 2:

Father and Son in conversation
Late in the eve in a garden
His life on the line for all of mankind
Kneels in agony
Prepares for suffering


Pre-Chorus:

He said, “Father, help me, I am broken
Father, help me, I am broken”


Chorus 2:

They’re all broken people
With all kinds of broken
Bodies and hearts and souls
I will be Your Savior, I will be Your Healer
I’m the One who makes You whole


Bridge:

Though my body and flesh may fail me
Still, You are making me new
I can face
Uncertain days
With You, with You


Music & Lyrics by Olivia Pothoff.  

© 2012
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 $3000.

Monday, February 11, 2013

Share the Love for Quinn 2013: Rain and Sunshine


I really want to educate people and give folks some idea about CF but I also don't want to upset people or be self-centered. Does that make sense? It has proven to be a crazy time to do this sharing because things have been crazy around here. My disclaimer: It isn't usually this crazy all at one time :) 

So, here is a little of the rain...

Quinn's CPT machine broke Friday night so we've been doing therapy by hand. Bummer. Quinn has been doing three nebulizer sessions a day.

Ryan has pneumonia and the flu. How do you get them both at the same time? He is down for the count. 

Here is a little of the sunshine...

Sela is well--Praise the Lord! 

I am well--Praise the Lord! 

Quinn's new CPT machine is coming Tuesday morning.

Ryan is on medication!

And we had a really, really good visit at the CF clinic today. I'll be able to sleep better tonight. 


A Cystic Fibrosis Clinic Visit in Pictures...
At the clinic we connect with the nurse (AWESOME nurse Ben), research specialist, respiratory therapist, pediatric pulmonologist, pharmacist, dietician, and social worker.

 Waiting on the 7th floor of Doernbecher Children's Hospital...this is where all the specialty clinics are located.

 Once we check in, Quinn gets all his vitals done (3' 9.95", 49 lb 13.2 oz). Some of the CF team check in with us to say hi and to give us paperwork to fill out. Quinn and our family are a part of long-term CF studies.
 We head out to see the respiratory therapist, John. Anyone in the room has to wear a gown and gloves. Here tests are done to measure Quinn's breath--it assesses Quinn's lung function. He does a series of breaths....
 ...then blows out until John tells him to stop. Quinn did super well--I had been concerned if there would be a shift in his lung function. There wasn't!
 Next we head to an examination room. This is the "cool room" with the fire engine examination table. Lucky us :)
 Dr. Powers is part of the team of pediatric pulmonologists we've been working with since we first came to the clinic. He has a high-powered stethoscope for more in depth listening. He listens to various points of Quinn's lungs.
 Listening to another section of Quinn's lungs.
 Hmmmm...anything up there? People with CF can get polyps in their noses so Dr. Powers checks to see if there is anything there. Folks with CF can also have increased issues with sinuses so that is also a spot to double check.

We spent some time talking about Quinn's cough, antibiotics, lung function, and creating a game plan. I was really unsure what Dr. Powers might hear in Quinn's lungs but he said they sounded clear!!! HOORAY! The game plan is...do life! Quinn can get back into the swing of things and proceed with gusto. Terrific news!

Because Quinn has shown he can do the lung function tests effectively, we were introduced to a new therapy technique. When Quinn was born we did his Chest Percussion Therapy (CPT) by hand (we used little pink mallets). When he was old enough he was able to use a vest and machine to do CPT. It is an external method of addressing lung issues. The NEW therapy technique uses breathing exercises as an internal means to deal with lung issues. The tool used is simple and portable. It doesn't take a long time. But, it is effective!!!!! I was blown away. 

We normally do a lot of planning around when we need to do therapies and doing CPT is a big one that needs to happen at least twice a day. Quinn still has to do his nebulizer too but this therapy method, called "PEP", can be done on the go in the car, at someone's house, at the mall, at school, wherever. Brilliant!  And, Quinn feels like it is a game when he is doing it so he was all fired up today about using it!
 
 Quinn holding the PEP tool

Not every visit is awesome...but I will take an awesome visit like today. Yes, please!

Thanks so much for the encouraging words and prayers. We greatly appreciate them!!!

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 $3000.
 

Friday, February 8, 2013

Share the Love for Quinn 2013: Perseverance



Yesterday ended hard. Today started better. We put one foot in front of the other and go about doing what needs to be done. Quinn and I had a little chat about the extra therapies that needed to be done and we decided we could do it.

 Here is Quinn doing his nebulizer...we'll do this 2-3x a day

Quinn doing his Chest Percussion Therapy (CPT)...this is an air compressor shooting air quickly through the tube which inflates Quinn's vest and shakes his body. We'll do this 4x a day--it is what would be done if Quinn was hospitalized. Beat on your chest and talk--that is what Quinn sounds like.

 Sela pretends that she doing the nebulizer too.

In 2011, my friend Kim was pregnant and a few of us got together to share some words of encouragement. I wrote this for Kim then but this morning thought I would pull it out and revamp it as a reminder of truth for all of us.

per·se·ver·ance

[pur-suh-veer-uhns]
–noun
1. steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement.
2. Theology . continuance in a state of grace to the end, leading to eternal salvation.

Perseverance.” It is kind of an imposing word. 

No one remembers how to spell it. Where do you put the “r” and the “a”? 

Usually you use the word when you are enduring something. Who wants to endure something? 
 
And when I looked it up to define it, I was confident that this was the word for all of us. 

We are people who can persevere:

To persevere through seasons of Lost (I never knew which way that TV series was going to go),
to persevere through sleepless nights,
 
to persevere through tension,
to persevere through the seasons of rooting for your favorite team...which never seems to win,

to persevere through illness and discomfort,

to persevere through...

Our ability to persevere is key to being a mom, a dad, a son, a daughter, a husband, a wife, a widow or widower, a friend, a follower of Christ.

But it is the second part of the word that is the gift. It is the blessing.

Perseverance: Continuance, in a state of grace to the end, leading to eternal salvation.

A long obedience in the same direction~Eugene Peterson

You are a Pilgrim, a Disciple. 

And because you are willing to walk your road, you will draw your children, your people, your friends, your family with you. And you will show them how to live. And how to love. And how to speak truth. And how to walk. And you will do it each day. Day after day. “In a state of grace to the end, leading to eternal salvation.”

Because that is perseverance.

His peace to you…

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 $3000.

Thursday, February 7, 2013

Share the Love for Quinn 2013: Some days are like that


I had a whole other post written this afternoon and then the wheels came off the wagon. Ryan is home sick. Sela woke up in the middle of her nap hysterical. Quinn came home complaining of an earache. 

And it went downhill from there.

When someone with CF gets sick, things get a little tricky. Quinn got sick January 26th. The nasty head cold, fever, cough that has been going around. When Quinn gets a cough, I contact Nurse Ben at the CF Clinic to touch base. Because of all the sticky mucus in Quinn's body--specifically his lungs--when bacteria get trapped then it is harder to get well. Infections can get bigger than just the common cold so riding things out sometimes doesn't work. 

When Quinn is sick we do three to four sessions of Chest Percussion Therapy (CPT). Quinn typically does two a day in conjunction with using a nebulizer two times a day. He is able to inhale one medication two times a day and another medication once a day. On a normal day this takes about two hours total. When he is sick, he might be doing therapies for another hour plus.

Nurse Ben and I planned to touch base at the end of that week and see how Quinn's cough was doing. It sounded like it was getting better. Not coughing as much at night. So we decided not to do an antibiotic. One challenge for folks with CF is having to take antibiotics and then having a resistance built up to those antibiotics so we try to avoid them as much as possible.

Quinn went back to school this past Monday. We went back to doing two nebulizing/CPT sessions a day. Quinn has been coughing this week and last night he was coughing a lot during the night. That told me something was up. 

I called and talked to Nurse Ben this morning and the general consensus was that he needed to be on antibiotics. Bummer. And, that we needed to be doing three to four therapy sessions a day. 

I went to get Quinn's medication at our local pharmacy/grocery store and they had no record of the prescription. Our CF clinic is AWESOME and I knew the prescription had been sent. I tried calling the clinic but couldn't get a hold of Nurse Ben. My second call probably wasn't super coherent and honestly I thought I was going to cry. 

I decided I would call the doctor on call at 6PM...we were taking everyone's temperatures and only Quinn has a slight fever. I wondered if Nurse Ben and I had a miscommunication and he sent it to a different pharmacy. Eureka! I found it. I went and got it and when I got home Quinn had already gone into his room and laid down in bed. I got him up and gave him is medication--this should help an ear infection too. He was agreeable to doing another session of CPT and then going to bed.

Today is February 7th. It has been almost two weeks since Quinn got sick. I am pretty bummed that we had to do the antibiotics and I was pretty frustrated with myself that I had stopped doing the extra therapies. 

I'm thankful that we are able to access medical care and medicine. That is a huge deal.

I had some pictures taken of Quinn doing his nebulizer and CPT but can't find my camera. I'll have to post those tomorrow. 

Finally, I got an email today about a little girl with CF in Portland. She passed away at Doernbecher Children Hospital in December. She was 11. There is a family missing their sweet girl tonight. Sometimes that information sends me into panic mode. Quinn's almost 7. I know that every person's journey is different but my heart feels overwhelmed. 

Some days are like that.

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 $3000.

Wednesday, February 6, 2013

Share the Love for Quinn 2013: Everybody has something


Everybody has something. 

I think that is one of the main things I've learned on this journey. 

Everybody has something.

Our experience and journey is unique to us but we know that there are many people we encounter every day who have something that they are challenged by, navigating, working through, or praying through. 

Some of those things are more obvious then others:

I know that about a young man who has cerebral palsy. 

Or a little boy with down syndrome.

A woman with a bald head who has cancer.

Others are unspoken:

A woman caring for her blind and mute son.

A father caring for his wife with Alzheimer's.

A mother grieving her son killed in war.

-----------------------
I pay more attention to people in grocery stores. Especially to parents with kids with some medical issue. Quinn's issues aren't obvious and people don't often notice. But, sometimes there is a look on a face that I can recognize as my own. 

When you are different in some way, people often look the other direction. When you are a parent and your child is making strange noises and drooling, people often hurry to move past you in an aisle. I always have this question in the back of my mind...I wonder if anyone has told that mom that her boy is beautiful? And honestly, I sometimes have to go down a different aisle because I don't want to cry all over that mama. 

One day, I pulled myself together and approached a woman whose elementary age son was in a stroller. I had to say something a couple of times to get her attention. You know how you can walk through a place and block people out? I do it too. So did she. I felt like I had to explain myself in some way but finally just told her that her son was beautiful and that she was doing a really, really good job. She shared with me about her son. Told me some stories. She had an older son who had passed away from the same genetic condition.

We all experience challenges and deep sorrows.

For those caring for parents, siblings or spouses, or children...

Your loved one is beautiful. You are doing a really, really good job.

I want you to know that you are not alone.

I recognize that you feel different sometimes.

That there is a responsibility to count pills, or administer treatments, or monitor safety, or be an advocate, or change diapers on your ten year old or your mother's catheter...and you may fear a trip to the ER, missing "something", making the wrong decision, not calling the doctor at the right time. May your heart be at peace.

Your loved one is beautiful. You are doing a really, really good job.
Don't give up.

Encourage someone today...

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 $3000.

Tuesday, February 5, 2013

Share the Love for Quinn 2013: mutants...not the turtle ninja kind


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. (from www.cff.org)

(To learn more about CF, here is a video we shared yesterday about Quinn, CF, and the CF clinic made by Ethan and Corina Burke.)

 What does this mean for Quinn?

It means a lot of things. Quinn has inherited two mutant or defective genes from Ryan and me. One is the most common among people with CF (called Delta F508) and the other is one that had not been identified previously. Johns Hopkins maintains a huge database of these gene mutations as part of ongoing research. 

For folks with two Delta F508 mutations, symptoms are often more severe. Because Quinn only has one copy of the Delta F508 and this other new mutation, we don't know what that means for Quinn. The doctors aren't able to predict how sick Quinn will be. We just have to take each day as it comes.

In 1989, the CF gene was identified. In January 2012, a drug was approved by the FDA called Kalydeco. This was a BIG deal. This drug was effective in patients with a different genetic mutation than Quinn's but the amazing thing was that it helped the gene function more like it was supposed to. Not 100% function but instead of constant thick, sticky mucus, it thinned the mucus out and improved lung function!!! BIG NEWS!

Work is being done to develop a similar drug that would benefit people with the Delta F508 mutation--the testing is for people with both Delta F508 mutations. I'm not sure how this might impact Quinn in the future because he only has the one Delta F508 mutations.

This is why 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 $3000.

 Quinn at the Great Strides Walk 2012

Here is a little more information about Cystic Fibrosis:

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 late 30s.
    (from www.cff.org)

Monday, February 4, 2013

Share the Love for Quinn 2013: A video (post 23)

Over the weekend, I was thinking about all the different things that we could share about life these days. Cystic fibrosis, Quinn, treatments, growth, family, prayer, medication, insurance, friends, thankfulness, fear...

and I realized

I am really nervous.

When we shared some of this journey in 2011 an unexpected benefit for me was processing through some things that I didn't even know were there. It was good but it was also really emotional. There are joys to name but also fears that lurk. Because we love this kid so much I'm a little nervous about sharing and getting all emotional. But, if you know me, then you know that is part of how I'm wired so, maybe you could pray for me? And for Quinn, Ryan, and Sela? For all of us as we invite you into some sacred space.

 Quinn's tiny feet (1 day old)

Ryan, Quinn (6.75 years old), and Sela (3)
(yes, Quinn is wearing a white tuxedo jacket)

On this journey of the next two weeks I hope you'll get to learn more about what Cystic Fibrosis is, how Quinn does life with this chronic illness, a mom and dad's thoughts, a visit to the CF clinic (we go on the 11th), navigating school, and maybe a first kiss story. 

The kid has moves :)

Our friends Ethan and Corina Burke made a video for us that we shared in October 2011 about Quinn's story, the CF clinic at OHSU, and what CF is. It is a little over four minutes... 



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 $3000.

Friday, February 1, 2013

Share the Love for Quinn 2013 (post 22)

















Photo by PhotoMacy

In 2011 I did a series called Share the Love for Quinn.

We thought we'd like to share a little bit more......where does another two years lead?

I'd like to invite you to check out the blog over the next two weeks in order to hear about Quinn's continued journey with CF...

some of the funny 
and the fears 
and the challenges

and maybe learn a bit more about CF too. 

Starting Monday (the 4th), I'll post a story every day through Valentine's Day.

We are joining with the Cystic Fibrosis Foundation and national Great Strides fundraiser--we'll be walking May 4th in Portland to raise money for CF research and medical support. 

Consider donating to Team Win with Quinn--we are thrilled to be able to support Quinn's health in this way!