Sunday, May 30, 2010

Have I ever mentioned . . .

Have I mentioned I'm a photographer? All fun photos of Peter come from lots of photo-taking experience and some great Nikon equipment. It's been such an amazing journey to record Peter's life through my professional photography. You can see more of Peter on my photography blog today. Click on over!


Friday, May 28, 2010

Publicity!

The Georgia chapter newsletter came out today. Look who's featured! We submitted our photos from the walk to the CF Foundation for publicity purposes, so we may be seeing more of our team and the other people we photographed at the walk. Coo-ool.


And the chapter used our photos in their information sheet about Great Strides Atlanta: http://www.cff.org/UploadedFiles/Chapters/georgia/ChapterEvents/ATL-2010-GS.pdf. I love that you can see Peter's purple balloons in the first pic! And the last photo is a favorite of mine from the walk.




It would be exciting if some of our photos are featured on the national level. We'll see . . .

Thursday, May 27, 2010

A Little Pavement Pounder Making a Huge Difference

My sister, the team leader for Peter's Pavement Pounders in Sioux Falls asked her daughter to do a little fund raising in the neighborhood today. (Their team walks on June 5th.) She raised $105 just this afternoon! I told my sister to make a video of it for us.


Well I would donate! Thank you SO MUCH, sweetie. What an amazing cousin you are to Peter. Click here to donate to the Sioux Falls team.


Wednesday, May 26, 2010

Vest + Mini Trampoline = Airway Clearance Fun



A while back, we bought Peter a mini trampoline so he could get some of his extra energy out. Also, trampoline jumping is an excellent exercise for the lungs and loosening mucus. I resisted putting him in a sweatband and donning some legwarmers when we got the trampoline. It's so Hooked on Aerobics. It's also a lot of fun. Peter's found a way to get extra airway clearance out of the combo of his Vest and the trampoline. Go Peter!

Kid Quotes: Peter

Kid Quotes on Tales from the Crackleberry Bush

My sister has started a Kid Quotes blog carnival. I love the idea! Here's some of Peter's latest idioms:

"Can me squish you?" It means: Can I hug your head? He instructs either Jacob or me to take off our glasses and then, attack! Peter gives awesome head hugs.

"These my milks." After bath, Peter says this proudly while sticking out his chest and indicating well, you know. I'm a big advocate of extended breastfeeding--Peter breastfed until he was 2 and a half--so I'm sure that's why Peter's got such pride in his chest. What a cutie!

Okay. Grab your own button and join in!






Kid Quotes on Tales from the Crackleberry Bush

Friday, May 21, 2010

God bless these little feet


God bless these little feet
and the feet that walk for him

Our Ogden UT team walks tomorrow! Thanks to Stacey for being such an amazing team leader. We're excited Peter's Utah relatives will be able to pound the pavement for him.

Thursday, May 20, 2010

Great Strides Atlanta 2010

Last Saturday was Great Strides in Atlanta. Here's our Atlanta team in action!

Driving down to Georgia Tech with a backseat of purple balloons


Meeting up with the rest of our team members


Enjoying free popcorn and cotton candy before the walk

Starting to walk

Enjoying the walk on the Georgia Tech campus with about 1,170 other walkers!





Snapping pictures



Finishing the walk with worn-out kids

 

Enjoying music and food at the after-walk picnic

Getting photos of our team




Remembering who wer're walking for


You can see more photos on our Facebook page, including other walkers I snapped while we were there!

Monday, May 17, 2010

We Went. We Walked. We LOVED It!

Great Strides on Saturday was AWESOME! Here's one photo for now. I have a lot more, but have to finish editing them and getting them uploaded. We had a great group of people that came and supported us, and I think of all the people that donated as "walking with us" too.



Our fund-raising efforts raised $1,860 + $35 cash/check donations. That means we are only $105 away from hitting our Atlanta team goal of $2000. If you haven't donated yet, it's not too late! Click on the donate link and help us hit our goal before the end of the month.

And look at our national team fund raising goal . . . woohooo! We're going to get that for sure. Maybe we should raise our goal!

Our next team to walk is the Ogden UT team this Saturday on May 22nd!

Saturday, May 15, 2010

Wear Purple for Peter! Great Strides Atlanta Saturday!


We're just about ready for Great Strides Atlanta tomorrow! It's been raining buckets tonight, but we're going to walk rain or shine. We've got purple balloons, purple shirts (even found one for Peter), and we're excited to pound the pavement at Great Strides. (Click here for directions.)

We've been thinking purple for weeks now, even bought myself a new purple purse. Jacob's been wearing purple for the past three days at work and bought me purple hydrangeas for Mother's Day. Now as part of our Great Strides weekend, we're encouraging everyone to wear "Purple for Peter" either Saturday or Sunday and then upload a picture to the Peter's Pavement Pounders wall on Facebook. A shirt, a scarf, a hat, or a ribbon . . . anything will do. Show your support for Peter and cystic fibrosis awareness.


 
*Great Strides Portland is also tomorrow! Go Tom and Jess!

Thursday, May 13, 2010

We sure love this kid!



We sure love this kid, and so do you! Thanks to all the people who have donated to our walk fund. Here are some of the comments people are making along with their donations:

Good luck Peter!
We love you! Enjoy the walk!
GO PETER! We love you little guy!
Keep up the great work!
Go Peter! Our prayers are with you.
Go the Distance!!!!
Wishing you the best of health and happiness!
Good luck on your walk! You are all in our thoughts and prayers!
Keep holding strong!!!! God bless your beautiful family.
Bless your hearts. Our prayers are with you for your success.
For a cure.
Go Peter!
God is still in the miracle business! A cure can be found!

Tuesday, May 11, 2010

Sometimes change is hard

I ordered Peter a new vest from Hill-Rom since Peter's old one was getting pretty frayed. The nice thing about Peter's Vest machine is that the hoses and vest attachments are replaced as Peter grows out of them at no extra charge. They have a new model of vest out: washable outer cover (in blue, pink, and black) with a snap-in inner bladder that does the vibrating, not to mention hose attachments that actually rotate. Yay! I am so tired of the old style which Peter often unhooked or wiggled out of during his treatments.

Well here was Peter's reaction this week when our shipment arrived.

What's this?


No! I want my vest. I not like the blue vest! 


It the baby's vest. It not my vest!


I want to do my vest. My black vest. That's good.

Peter wouldn't wear the new vest for a couple days. Fortunately, Daddy persuaded Peter to try on the new vest by convincing him that it was like Thomas the Tank Engine's colors. Now we are going well with the new vest. (Gotta get some pictures of that soon.)

Friday, May 7, 2010

Pound out CF with Peter's Pavement Pounders


It is time for Great Strides walks all across the country. The Atlanta and Portland walks are next Saturday and after them will be walks in Ogden, Sioux Falls, and Texas. We are so excited for the support our national team has already received, and are looking forward to this month of walks!

We hope you enjoy the video--true to the life we now lead--full of medication, treatments, and doctor's appointments, but also filled with the joy and love we have for Peter. (You might also spot the little girl I babysat, Peter's "borrowed litttle sister.") Our greatest wish is that a cure will be found (or at least something close to a cure) within Peter's lifetime, and hopefully before irreversible damage has been done to his lungs. There are drugs in development right now that are attempting to treat the root cause of CF. That's totally mind-boggling to me, but incredibly awe-inspiring.

Please think of Peter's life, and all the other lives you are affecting (more than 600,000 worldwide) when you donate to CF research. Then, in the future, when new treatments and medication extend their lives even further, you know that will be because you donated. Thank you so much!

Bake Sale!

My sister headed up a bake sale at SDSU for the Sioux Falls branch of Peter's Pavement Pounders. Way to go! She also included a poster with pictures of Peter and a little about CF. You can read about it on her blog: Tales from the Crackle Berry Bush.


Tuesday, May 4, 2010

CF Book Review: Breathing for a Living

I've recently been reading Breathing for a Living by Laura Rothenberg, a young woman who chronicled her fight with CF through a double lung transplant. I'm not done with the book yet, but have been staying up late at night to read it, so I know it's a good one!

The book is real and raw in some parts but definitely a good read and a fitting legacy to this amazing girl. I first heard of Laura from NPR through their Radio Diaries series. At that time, I was single and didn't know much about CF, but her story touched me enough that I remembered it through all these years, and listened to it again after Peter was diagnosed. I love how you get to hear Laura's voice, her cough, her humor and honest appraisal of her life. It's free online and worth a listen: My So-Called Lungs.

Anyone read any good books relating to CF lately?

LinkWithin

Related Posts with Thumbnails