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

1 comment:

  1. Great post! I hate those numbers, but thank you for putting them out there for us to see!