Hi friends!
It's been a bit, well more then a bit! (almost two weeks) Where has the time gone?
March 3, 2012
Speaking of where has the time gone, this is Violet almost exactly a year ago!
And this is her the other day.
What a difference 1 year can make!
I just had to share such cute pics.
Anyhow, back to my update... I made it to DC and back, and everyone survived the trip. The girls did better then I expected without me (sadly), and I without them.
Us with Dr Beall President of CF Foundation
The conference was great, and I am so glad Mom and I went. We heard a lot of special people speak, and listened to others share their stories about CF. While it was quite sad to hear from parents who unfortunately lost their children to CF, it was endearing and inspiring to see them continue in the fight to find a cure for all the other children and adults battling CF. It is awesome learning about all of the chapters around the US helping to raise more then 75 million dollars last year. Some of the larger chapters alone raised over 1 million themselves. It was unbelievable to hear about the medical advances that have been made over the last year, and to get to see in detail how close they are to another miracle drug to help fight the largest gene mutation out there. What a miracle this may be! I only wish that if we are invited again that Andy can come along to share the experience. It would be even more amazing if by chance we do return someday,that we would be able to share how Kalydeco has positively affected our daughter's life....but our dream, reality, is still " yet to be determined"
Dr. Beall's face lit up when we told him we have a baby with G551D. He assured us she will be ok, just as soon as she can get the "magic blue pill" He informed us they are doing clinical trials now in children 2-6 years old, and if she can't get on it earlier, at least we know she will be a candidate at 6...But boy how things can change in 4 1/2 years. No matter who tries to reassure us that Violet will live a long happy life, the cynic in me keeps thinking " I'll believe it when the pill is in my hand". Until then it just seems too good to be true for us! I hope I am proven wrong!
At the hospital waiting for her X-Ray today
Today was a great clinic visit. Andy and I both got to take her, and she did marvelous! Besides being put in the torture contraption for her X-Ray, and being laid on the measuring table ( for whatever odd reason) there were no meltdowns. Perhaps the tag team approach with Mommy & Daddy both there was double reassuring? Or maybe she was more comfortable with the female doctor? Whatever the reason, we are relieved.
She gained weight since last visit, and her X-Ray improved. Now we just spend the next few days impatiently waiting to hear nothing has grown on her throat culture, and all is well around here!
Now I hope to live off the motivation I captured at the conference and pass it onto our friends and family! We will continue to raise money, because money buys science, and science buys lives! We are working to make CF stand for Cure Found!
There is still time to join our team for the Great Strides Walk May 4th. Or if you are unable or unwilling to walk, please consider a donation to help our team reach our goal again this year.
And don't be left out on our 1st ever Wine, Cheese & Chocolate event Friday April 12th 7-10pm @ Belmont Country Club. Tickets are $30 each and can be purchased by emailing VictoryforViolet@bex.net
* Every cent goes directly to the CF Foundation*
How could you say NO to this face??
Or this one???
