Showing posts with label team faithfull. Show all posts
Showing posts with label team faithfull. Show all posts

GREATSTRIDES 2010

May 2, 2010
We did it! Year #6 of walking as Team FaithFULL on May 1, joined by 66 walkers, 1 fur person and over 10 who couldn't make it. Together, we've raised OVER $7500 this year and as a Sacramento whole, close to $110,000!

The weather cooperated incredibly well this year (making up for last year's rain), the walk route was a little longer and made for a fabulous stroll. I was asked to share a few words about why I became involved in volunteering for the Cystic Fibrosis Foundation and didn't expect to get emotional multiple times...it happens I guess. It's always a challenge to be sure to talk with everyone and I always wish the event was a little longer just so that I can spend equal time. My drive home consists of going over in my head what were the great parts, what we could improve on for next year and a reflection upon the many meaningful, though brief, conversations with people from our own team whom are friends or family we rarely get to see, people from the CF community and new people. I am constantly amazed at the support, love and willingness of all of you who are able to donate and/or come walk with us. To have one of the largest teams for multiple years in a row is so amazing to me it's really hard to put into words. So my 'problem' of not getting to chat with everyone is a good one to have :)

This year our team added red ribbons to our walk shirts in honor of a little boy named Connor who's favorite color is fire engine red. He has CF and is not doing so well. Connor most likely will not live to his next birthday and get to experience more than 7 years of life. His mother keeps a blog at www.notsobrightandshiny.blogspot.com which I've followed for weeks now and have a hard time reading all the way through without breaks to dry my sobbing eyes. His story is heartbreaking and an incredible reminder that CF is real and in desperate need of a cure. And for everyone, it's a strong reminder to hug and love the ones we love with all we have while we can....
So thank you, from the bottom of our hearts, for your care, concern, love, prayers, help and support. We love you.

April 2009

Yet again, the past few months have flown by! Last September we'd found out that Faith cultured Pseudomonas in her lungs for the second time, so every other month has been spent with an hour of additional daily breathing treatments....this will go on until there is a better medication to take it's place. We've learned to plan the year in advance around these months. Thankfully, that 'TOBI' month just ended and it sure makes us appreciate that extra time, having only one breathing treament to do daily!

Morgan has been working out of town quite a bit, usually once a week and Stephanie has been picking up extra work, now officially working Mondays and Wednesdays. We're grateful for the work, but it has thrown a slight curve into our routine. The nights Morgan is away we call 'girl nights' and Faith usually ends up in bed with mommy, eating popcorn or cookies. Last week she said, "Mommy, since daddy's not here will you do TWO big X's?" That's a part of our goodnight routine, Morgan says his little skit while tickling her back and I do mine...that night I had to fill in ;)

In February, Faith had her checkup with the pulmonologist and was amazing. She sat like a big girl and opened her mouth for her throat culture. She's really coping well with her medications, treatments and Dr. visits so long as we prep her for what to expect. A week prior to her 4th birthday, she was due for annual blood labs. That was not her favorite and yes, of course she cried, but it wasn't a screaming, frantic cry...it was a sad, 'I shouldn't have to do this, but I know I have to kind' of cry. She didn't want to hold her arm out, but was sitting in my lap so I opened her arm and the 2 techs and I were all softly talking to her while Brooke stood and watched. Just before or after the needle went into her arm, she completely stopped any of her strength against it and let it all happen. She did wonderful and by the 5th vial, which had a purple top, the one she'd wanted to have, she actually had a smile....through the tears. Best of all, her labs came back perfect! We had to redo the urine lab, but the second time was fine. At her CF Team appointment in March, we quietly celebrated Faith's 4th birthday by bringing in cookies for the staff....they've helped us to get through her 4th birthday with no IV's and no hospital stays!

Faith has been saying some interesting things lately. She tells us, "I love you 60 lbs," that number varies up to a million! Ahhh, to be loved a million pounds by your precious 4 year old is savory ;) On the way to that CF team appointment in Sacramento, she said, "I'm gonna be a mommy someday!" We followed with, "Yes, of course you are!" After a few more exchanges, she decided that she wanted to live with us forever and then said, "No....(about having her own baby) I won't know what to do!" It was SO cute, haha! She's alos been talking lately about how long we'll all live and how "our family will live forever, right?" She seems so young to be concerned about it, but she does have a few relatives who've passed and knows that if you squish a bug it won't come back...

Speaking of bugs, she's way in to looking for worms under rocks for some reason....gross. Faith's really enjoying her once a week at preschool and will start dance class back up again next week. Brooke has gone to school with her a handful of times now and LOVES it. We'll be going to a big Easter party/egg hunt there this weekend.

Brooke has been saying small sentences more often and tries to help by giving Faith her pills. Sometimes she attempts to sneak Faith's Prevacid or vitamin pill b/c they look and probably taste like candy.

Faith had a Tinkerbell birthday party in March for her #4....it was wonderful, so many friends came and no one didn't show due to illness! All the girls had a great time playing games, doing crafts and earning parts of their fairy outfits...especially the wings.

More news...we got a PUPPY! She's an American Mastiff I've been on the wait list for over a year to get, but have wanted since we lived in Pasadena 6 years ago! We named her Falon, she's adorable, super sweet and will be a wonderful friend for the girls to grow up with!








We are looking forward to going to Disneyland this month and camping this summer at Sly Park and Yosemite...in between those lengthy treatments of course.

This year, I've decided officially not to do "Speeding for a Cure" at the Roseville Speedway in September. It was a sad, tough decision and though we did make close to $7,000 last year and $4,000 the year prior...it's just too much for me to do almost alone this year with the changes in the CF Office, working and living life. Sooooo, that means that the GreatStrides Walk on the West Steps of the CA State Capital is IT! PLEASE, come join us. Sign up at www.TeamFaithFULL.com, consider making a donation whether you can come or not and help spread the word...we need a cure and I'm guessing this year is going to be a tough one to make advances in research based on the economy. If you are not in the Sacramento area, there is surely a walk site near you that needs volunteers and walk teams! www.CFF.org

Don't forget to watch the NEW 2009 video of Faith!
View this montage created at One True Media
www.TeamFaithFULL.com 2009