Excellent News...

Last night I had the opportunity to attend a Great Strides meeting (the fundraising walk for Cystic Fibrosis) and the news was just AMAZING...

First off, there is a new drug in the final trial phases called VX-770. While this drug won't change Patrick's DNA, it has amazing power. It is able to work on a cellular level. Basically it allows those proteins that are "stuck" in Patrick's cells to get out. This is HUGE! I'm hesitating to say CURE, but if this drug does what the trials are showing, Cystic Fibrosis patients will no longer have a short life expectancy. I was in tears as they read the news.

One of the volunteers at the meeting is in contact with a patient on this drug trial. This patient sent an email that she shared with all of us. In the 28 days that she has been on the trial, she has gained 10 pounds. But perhaps the more amazing result has been her lung function. She went from 50% Lung Function to 83% in just 28 days. That is with no respiratory drugs, no exercise, just the VX-770 (well, technically, this patient doesn't know if she is taking the placebo or the drug, but those kind of results don't happen with placebo).

VX-770 will be ready for the FDA's approval in 2012! We are SO CLOSE!

Another exciting piece of news is the appointment of the new National Institutes of Health Director - Dr. Francis S. Collins. Why is this so exciting? Dr. Collins was the scientist who discovered the Cystic Fibrosis gene. As the new director, he is making CF a priority. Finally we have some government support!

While Dr.Collins obviously has a soft spot for Cystic Fibrosis, his reasons for supporting CF are well grounded. Because CF is so close to a cure, this will pave the way for other genetic diseases (sickle cell anemia, parkinsons, etc.).

We are gearing-up for our next walk. This year I'd like to focus on businesses. I was amazed to hear that only 20% of the money raised for the walk comes from businesses. The CFF offers a pretty good deal to businesses that donate - for only $500 they get their company logo on the back of the shirt (right there next to American Airlines and all those other big sponsors) and they get signage at the walk. Pretty sweet deal for a business - that's a lot of advertising. If you know of any company that I should contact, please let me know! Even if they are not in Spokane, we can arrange to get the logo onto the shirt of the walk that is closest to them.

I can't even stomach the thought of a cure being within our reach, but not available to my son because of money. Please join our fight!

Jack...

We just recently signed-up for DirectTV. Before that, we did not have cable (just your basic channels). Well, I can tell Jack might be enjoying this new little luxury a little too much. Last night he asked me...

"Mom, can we PLEASE stay-up until eight seven central?"

Christmas Morning...

Christmas Eve...

First Snow!

We finally got enough snow for the boys to play in. They had a blast! It was Henry's first time playing in the snow. I brought him in a little early & let the boys finish playing (it was so cold!) but Henry had to watch out the window...







We are supposed to get a whole lot more snow soon...we'll see!

Taking Christmas Pictures...

I tried to take some pictures of the boys for Christmas. I ended up taking about 50 pictures before I got one decent one with all of the boys looking...


I love this one, you can clearly see how much fun Henry is having.


This is what happens when I try to have them sit in front of the tree.



Back in front of the tree (notice the ornament Henry stole - I love that look on his face).


Finally, a picture with all boys looking and sort of smiling.

You should be getting the one we decided on in the mail. Sorry about the card - I didn't realize it was for a 3x5 picture :-)

Merry Christmas!

Henry Helping in the Basement...

Henry is 15 Months Old!

He is such a big boy! He is always on the move and loves to eat. He has lots of curls in the back, but his hair is straight on top (sort of like a Jack/Patrick mix).

He still has those BLUE BLUE eyes. He likes to sing and is saying lots of words (he says "thank you" every time he pulls a dish out of the dishwasher). He also knows about 10 signs (sign language).

Lately, he has been cutting his molars - he now has 14 teeth! He'll be going to the Dentist in January for his first check-up.

We're excited for this Christmas with Henry. He thinks he is about 5 years old and refuses to play with "baby toys" - so we know he'll be excited to play with the older boys' toys.