Saturday, April 30, 2011



Our Great Strides walk in Yorba Linda was today, and it was awesome! Our team, Go Gwena Go!, raised more than $5,135 for cystic fibrosis research. Gwena walked about half a mile and had a great time.


Thank you to everyone who came out to walk with us, and all those who raised money or made a donation to cystic fibrosis research! It really means a lot to us.



More pictures to follow!

Monday, April 11, 2011

Genius Baby!

Gwena had her 18 month checkup last week and they asked me if she could say 6-10 words. Ha! Try 32! Here they are:

mama
dada
uh oh
up
down
hi
bye
eyes
ears
toes
belly (bellybutton)
boom
dog
bear
bird
baby
book
ball
apple
milk
back (as in "put it back")
pee pee
poo poo
elbow
eyebrow
peeka (peekaboo)
Oui-Oui
Doudou
Mickey
blankie
cookie
keys

Of course there are a ton of words she can understand but not say, and a few she will repeat after I say them but never says on her own. So yes, that's right, I have a genius baby. ;P

Sunday, April 10, 2011

The End of our Clinical Trial

Well, we returned to Stanford and finally had Gwena's second pulmonary function test, or PFT. She is now done with her clinical trial, and has a real prescription for the study drug, hypertonic saline! Here are her PFT numbers for last year and this year:

last yearthis year
FVC, ml91%76%
FEV 0.5, ml80%81%
FEV 0.5/FVC88%106%
FEF 25, ml/sec76%97%
FEF 50, ml/sec59%103%
FEF 75, ml/sec56%73%
FEF 85, ml/sec57%11%
FEF 25-75, ml/sec57%96%

They told me for the ones that went down, they think she was closing her glottis and the result wasn't accurate. Most of the numbers went up! Yay!

Last year's report said, "Early obstructive changes at the small airway level and with evidence for air trapping."

This year's report says, "Fairly normal flows and volumes without evidence for obstruction."

YES!!!

We don't officially know yet whether we had the real hypertonic saline (7%) or the control drug, isotonic saline (0.9%), but I will be very surprised if they say she had the control.

Hypertonic saline is a pretty new treatment for CF (the study on it was published in 2006) and this is the first time it's been studied in kids under age 6. I think it's an amazing thing and I'm so glad Gwena was able to start on it at such an early age!