There he is!
What a Stinker!
Tuesday, February 16, 2010
Saturday, February 13, 2010
Mt. Spokane Tubing...
We took the boys up to Mt. Spokane today. Jack and Patrick had a blast! Henry's boots kept falling off so he was pretty uncomfortable, but he did love being pulled back up the hill by the tube lift. We can't wait to go back!
Wednesday, February 10, 2010
Thursday, February 4, 2010
Jack's State Testing...
At my last PTO meeting, we were briefed on the state testing that was recently done at Jack's kindergarten. We were told they test the kids at the beginning of the year and about 15% of kids entering are "Tier 1" - meaning at or above grade level. They test these kids again half way through the year and about 50% are then at Tier one. Finally, at the end of the year 75% are at Tier 1.
So, when I got home I checked Jack's scores online (I love that his school has everything on there). First I checked his recent test and I was glad to see he is in Tier 1. Then I checked his pre-kindergarten test (which I didn't even know was available) and guess what? Turns out he was a little smarty-pants going in - Tier 1! His numbers have shot way up since that first test, so even though he has stayed in the same Tier, he is making great progress.
Jack has been reading quite a bit lately! It's amazing how fast these little minds grow! He is almost at the 100 days of kindergarten mark - which means 80 days left until we have a first grader (and Patrick will be starting Pre-K next year).
Patrick's CF Appointment...
Patrick had his CF appointment today - everything went really well (as far as Patrick's health goes - taking 3 boys to a Doctor's appointment that lasts 2 hours, never goes well for mom). Surprisingly, Patrick is actually growing (we are having MAJOR food battles) and he is actually a little above the 50% - a rare thing for a CF kid.
I've added a little bit about each boy on the right.
I've added a little bit about each boy on the right.
Monday, January 25, 2010
We finally have a Wall decorated...
So we've been in our home for over a year and a half and we've finally started to decorate.
Here's the before of our wall that leads to the Basement...
Here is the after. It is painted blue. I wanted a dirty Robin's Egg blue and I think this color really works (hard to tell in the picture)...
Plus a few close-ups...
Here's the before of our wall that leads to the Basement...
Here is the after. It is painted blue. I wanted a dirty Robin's Egg blue and I think this color really works (hard to tell in the picture)...
Plus a few close-ups...
Thursday, January 21, 2010
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!
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!
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