Tuesday, March 29, 2011

Great Strides Honolulu

We are Princess Power

We're gearing up for the annual Great Strides walk.  Our walk is scheduled for Saturday, May 28th at Kapiolani Park, Honolulu.  I'm very excited.  We are expected to have more walkers and teams than last year.  We'll have a few more things for the kids.  We have more volunteers and more people on the committee to help with the walk to make it an even bigger success.   What excites me the most is the fact that someone from the CF Foundation is actually coming to the event and I get to walk around the park with my little princess .  Oh, I'm very happy about that.  The past two years I've had to stay back and keep watch over our area and missed out. 

Our team  Princess Power really would love to have your support and would love it if you could donate any amount to help find a cure. Gosh, it would mean the world to us.  Rachel is doing great, but it sure isn't easy for her to stay healthy with CF (healthy with CF....if there really is such a thing?).  And yes, Rachel does work hard - it's not all me - I'm teaching her now little bits at a time what she has to do to keep herself healthy.  She's five but really acts so grown up for her age in regards to her daily regimen. 

Rachel walking with her daddy at the Great Strides walk 2010

A little Q & A regarding how Rachel is living with CF -

  1. What is significant about the number 4,320?
  2. What about 1,460?
  3. What about 1,095?
  4. And 730?
  5. What do Feb, May, Aug, & Nov mean to us?
  1. in one year the number of pills Rachel takes in to stay healthy (it's more if she gets sick)
  2. in one year the number of hits she takes off the inhaler before chest therapy
  3. in one year the number of breathing treatments Rachel does
  4. in one year the number of chest therapy sessions she does to kick mucus butt
  5. in one year the number of regular CF clinic visits Rachel has that last at least 2 hours and that's when she's doing great

I really want to cure CF so my baby doesn't have to take thousands of pills a year.  I want to cure CF so my baby can breathe easy.  I want to cure CF so my baby doesn't have to continue to be poked and prodded.  I want to cure CF so my baby doesn't have bother learning what pseudomonas is.  I want to cure CF so my baby never has to have another bronchoscopy, chest x-ray, or abdominal ultrasound.  I want to cure CF so my baby doesn't ever have to say, "Mommy, I don't like having CF.", ever again.  I want to cure CF so my baby never has to do another huff cough again.  I want to cure CF so my baby can sleep an extra 30 minutes because she won't have to do chest therapy.  I want to cure CF so my baby doesn't have to waste hours at the hospital for clinic appointments and procedures. 

Rachel (in the crown) and her friend at the 2010 Great Strides walk

Tuesday, March 22, 2011

Outrun CF - Island Style

Lagoons at Ko'Olina.

What? - Outrun CF
Who? - Rachel, Mommy (me), and friends
When? - March 20, 2011
Where? - Ko' Olina Resort, Oahu, HI
Why? - To beat the snot out of CF!

   Yawn.  Stretch. Ugh...it was early.  Up at 5am, Sunday, March 20, 2011.  Out of bed, got dressed in our gear, packed the water & snacks, and threw in some beach stuff.  Rachel did her chest therapy and breathing treatments.  I fixed a bit of breakfast.  Whew. Ready to go.  We got in the car, headed to the location. We had the sunroof open and music going.  We were pumped!

I'm ready baby!
Mommy and Rachel
Race route - lagoon 4 to lagoon 1 & walk back.
Pre-race warm-up.
Rachel insisted on saying, "Get ready, set, go!"
She ran....
And ran her little heart out.
Madison, Shanna, & Martha
part of our support & team; friends.
Presenting the Outrun trophy to Rachel. 
I did it!
She looked so proud....as she should have.
Rachel (5yrs)
 Outrun CF
March 20,2011
Ko' Olina Resort, Oahu, HI

You Are The Greatest!

Tuesday, March 15, 2011

Training for "Outrun CF" Virtual Race.

Outrun CF.... oh yea!

race route - the path through the lagoons at Ko'Olina

I'm so excited that Rachel and I are participating in something so incredible.  It's the first Outrun CF race.  We're actually doing a "virtual" race.  The main race is a half marathon taking place in Grosse Isle, Michigan on March 20, 2011.  The Outrun CF event staff received a lot of mail from people saying they'd love to participate but couldn't make it to Michigan......then the virtual race was born.  In the virtual race, you run in your hometown - any route - any distance you like the same day as the half marathon.  
our Outrun CF t-shirts

Rachel and I started training February 27th.  We jog around our neighborhood, at the beach park, and just yesterday we trained at the place we're doing the run - the lagoon path at Ko'Olina Resort in Hawaii.  We're pretty pumped.  Rachel is actually starting to get excited too.  At first, she wasn't thrilled about all this jogging business, but now she's talking about how she's kicking CF butt and making her lungs strong and how CF is going to lose the race!

geez Mommy

lookin' rough but kicked CF butt that day

"my legs are so tired" - that's all she would say
it's never about being out of breath

one of the attractions at our run site
"Pirates of the Caribbean" ship, too cool

gosh, isn't training beautiful?

go, go, go, go!

Stay tuned.  The next post will feature the winners of Outrun CF.  Just a hint.....it won't be CF! 

Monday, March 14, 2011

What the PFT?

    A few weeks ago, Rachel had clinic.  No changes in her status.  She's still gaining weight, growing great, no coughs, no infections, etc.  Just another day here in paradise. 
    As we were nearing the end of the clinic visit, the respiratory therapist said she wanted Rachel to try doing a pulmonary lung function test (PFT).  Usually around age 5 is when that starts and Rachel was two weeks away from being 5.  So, the RT explains and demonstrates how to do the PFT.  Rachel practices a couple times and then she does it for real.  She nailed it!  Nailed it the first time.....all three times!  The reference (what they expected) for Rachel was 86%.  A healthy person would be expected to score 80% or better.  She scored 90-100% all three times.  She increasingly did better with each turn. 
   I was impressed & so was the doctor.  His exact words were, "These results are impressive!"  Rachel just amazes me.  Needless to say, we celebrated that afternoon.
   What will Rachel "make it look so easy" next?  Who knows, but I can hardly wait to see!