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.

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