Merry Christmas & Happy New Year!







Busy as always, but staying sane and happy! We've had a great year together going on trips to Disneyland, Monterey, San Francisco, Sand Mountain, Cancun, Puerto Vallarta and of course enjoying our time at home...phew!

We've had a decent year in our battle against Faith's Cystic Fibrosis. She is nice and steady with her weight gain and height growth (must be the brie and crab she enjoys!). In September she cultured Pseudomonas (PA) after a 2 year span of not culturing it since her first time, which means 2 extra 25 minute treatments every other month FOREVER (until there's a more convenient/efficient treatment available...or a cure) now since this is her second round of it. PA is a common bacteria that is found in soil and water, essentially unavoidable for people with CF at some point in life. We were hoping of course to keep it away for as long as possible and it's something that you or I could easily fight off, but thrives on tissue that can't heal itself well. It's hard to make sense of it, but it basically adds an hour more of treatment time every day for a month, then break the next month and start again the next, etc. We're doing this in hopes that the bacteria, which is currently non-mucoid PA, does not turn into mucoid....much harder to treat. We are still incredible grateful for having no hospital stays yet and are very appreciative of her wonderful Sutter care team!

After our last update came Halloween and oh, how Faith loved that! She got to pick out her costume at the Disney store...Cinderella all the way...."with a big poofy dress and a crown and a wand and long hair." We didn't do the long hair, but she did get plenty of glitter! Brooke was Tinkerbell and though she didn't quite grasp the concept of door to door, she was happy as a clam once she had that first piece of candy and joyfully sat in the stroller to watch the kids run. Faith and cousin Qwynci kept racing each other to the next house trick or treating...when they were done, all the kids checked out their candy and stripped off costumes in exchange for cozier PJs.

November was full of birthdays and gatherings...we saw family and friends often, always a blessing to be able to get together and have no one be sick! Our family pictures were taken by http://www.katieelmerphotography.blogspot.com/ she's awesome!

Brooke is growing, learning more words and giggling with big sis everyday. On her terms, she enjoys cuddling, having one hand on her for comfort and saying "Cheese" really big when the camera is around. Her temperment is improving greatly as we learn to understand her strong will. Faith continues to be an incredibly happy, smiley young lady who amazes us often by the things that she says and her ways of interpretation. The other day we were tasting home made cookies from the family women's tea while sitting on the kitchen counter and she came up with all sorts of cute comments. She found a chocolate truffle, took a small bite and said, "Man, this one's good you should try it!" A couple of nights ago we drove down the Rocklin street of Christmas lights and she said so many things, but the best one was "Oh, look at that house, this is SO lovely!"

And I think our favorite quote of the year came just the other day when sitting in the backyard with daddy enjoying the firepit.... "This is my best life ever!"

Please SAVE THE DATE for GreatStrides Saturday, May 2, 2009 and join our team of family and friends walking and fundraising, along with many other teams, for better medications and an eventual cure for Faith and the thousands of others battling CF. We continue to be grateful of your enduring support and prayers. They are always welcome. May we all keep in our hearts the meaning of Christmas and have a happy and healthy New Year!

Warm Wishes,
Stephanie, Morgan, Faith & Brooke

Puerto Vallarta Mexico Trip






What a great time! Morgan, Faith & I (Brooke stayed with Grandpa & Oma) flew to Mexico and took a needed break. We layed around, swam for hours everyday, built sand castles &even saved baby sea turtles! Faith was a joy & fun addition, we were happy she was there as she always had something funny to say. Pure entertainment and excited to do everything. Her favorite things (& this is in pretty good order) were the following: Sea turtles, swimming all day, riding in an airplane, building sand castles/walking on the beach, foofy drinks, "my green girl" (a sweet girl/young woman we met, Jarren, whom Faith loved playing with and talking to....she even bought Faith a mermaid puzzle & little figurine when out shopping...she called her that b/c of her green swimsuit), staying up late & eating ice cream, "the tohel" (hotel), and swimming (again)!

Update on Faith

Faith's had a great summer...a few more birthday parties, gatherings, and swim days than ever before. We also went on a quad trip recently that she loved: caught a fish with daddy, counted stars through the tent and drank hot chocolate with marshmallows. Oh yes, and she was continually worried that she'd run out of rocks because she through hundreds into the river...

Morgan and I went to the CFRI conference in Redwood City in early August and learned a few new things from the fantastic speakers and met some wonderful people as well. We scored a Pari Trek during a Q&A, which is basically a portable nebulizer. So, rather than having to be plugged into the wall outlet somewhere doing treatments, Faith can do them on the go anywhere. Her favorite new spot is in the basket on her bike while she's riding it (though I don't think that's quite the idea the designer had in mind). The theme was all about pearls and how precious they are for so many reasons. We were able to buy a shell to take home and open with Faith to find the pearl inside and place it in a necklace. It was a Wish Pearl, so we were to make a wish before opening it to reveal which of 5 or so promises it would reveal. Faith wanted me to go first so I wished that one day she'd no longer have to do treatments...she really liked that one, so it became her wish, too. We opened up the shell to find none other than the pink pearl....the promise of health. "Thank you, thank you, thank you," I thought to myself, "How fitting."

Faith's body has yet to let go of the light cough she's had since the June fires and she's therefore been on a few extra breathing treatments each day. We saw the pulmonologist 2 weeks ago, who switched her nasal spray and told us not to let up on treatments until the cough is gone for 2 full weeks. Then last week we saw the CF Team, they said she's looking great overall...a few minor tweaks, a throat culture, a stop to feed the ducks at the pond and we headed home. Then yesterday, we got the results that the throat culture came back positive for Pseudomonas (PA)....ugh, here we go again!

She cultured this only once before, about 2 years ago - we hit it hard with treatments and haven't seen it again until now. It's one of probably the top 3 BAD bacteria we don't want her little CF body to have to try to fight off. It's also a bacteria that is very common everywhere...we're talking soil and water, etc. and something that you or I could EASILY off. PA very much likes defenseless environments though (ie. my baby's little respiratory system). Luckily, it still doesn't mean a hospital stay. Though it does mean 2 weeks of special oral antibiotics and 2 MORE breathing treatments per day every other month for six months. Good times, right? Ugh, I hate CF and I hate it more than anything for putting my precious little one through any form of suffering. PLEASE pray that we kick this bacteria in the butt and get rid of it yet again for at least another 2 years!

One last positive lately is that we got a Wii! It's so funny and fun! Faith is pretty good and really enjoys the bowling, but also likes the golf, baseball and "powing" or shooting the balloons. THIS will definitely come in handy while doing all these treatments! I'll have to take some pictures....

"Speeding to a Cure"

CLICK ON PICTURE TO ENLARGE
Please make checks payable to: Spectator Racing
and send to:
667 Downing Circle
Lincoln, CA 95648


Faith has been doing great lately. Her new things are watching food network cooking shows. It's the funniest thing because she kind of excitedly repeats what the cook is saying and then comments on whether she likes that ingredient or asks if we have it in our kitchen. We've been swimming quite a bit and she's learning to trust the water...still not jumping in, but she'll swim alone with arm floaties. Sister Brooke on the other hand, will stand on the side and fall right in assuming you'll catch her and she's also just in arm floaties recently! The girls have also been loving going to the Little Gym.

Morgan's been fixing up a little quad for her, so she likes to sit with him in the garage and do treatments. He told her yesterday if she ate all her dinner, then they'd take a ride around the block on the quad (in her new helmet)...so she did! Today at the grocery store she said she wanted to go home and watch one of those cooking shows so we can make it for dinner and she can eat it all and then daddy can take her for a ride on the quad! Geez, ok!


These horrible fires lately did take a little tole on Faith's lungs. After about the first week, she started up with an irritated cough, so we began her 4 breathing treatments per day to keep inflammation and mucus down, as well as the Vest. She's down to 3 treatments per day now, but we'll keep it up until the weather gets more stable...& we seem to make it work around 'life.' Her next appointment is in August.

Hope to see you at Speeding to a Cure 9.14.08!!!!!

Below is Faith enjoying our outing at the Enduro races (pumpkin is her car with orange #s)
video

4th of July



We had lots of food and festivities at Nana & Pampa's house for the 4th...then finished with the Lincoln fireworks show & our own show at our house!
Faith LOVED the watermelon eating contest, wheelbarrow race, playing with her cousins & being pushed on the swing as always. Brooke had a great time observing from grandpa Marlin's lap ;)

video

May 08 ~ Greatstrides walk & health update
















Another year has come...We had a great time at the May 3, 2008 Cystic Fibrosis Foundation's GreatStrides to cure CF walk! Thanks so much to all who came to walk with Faith and for all of you who made a donation to help find a cure! We know that one day our efforts will pay off...



This year, through the efforts of all who came to the walk, fundraised &/or made donations, our team was able to raise $8,800 & Blue Northern Builders raised an additional $5,000 for the Cystic Fibrosis Foundation! We plan to continue fundraising through 2008 to again surpass our $10,000 goal!


CFF is the leading organization devoted to curing & controlling cystic fibrosis. With money raised, the Foundation funds CF research, has 80 chapters & branch offices throughout the country, & accredits a nationwide network of 115 CF care centers, which provide vital treatments & other CF resources to patients & families (Faith goes to one every 3 months). To advance the search for a cure, CFF has invested nearly $300 million in promising scientific research in the biotechnology industry since 1998. As a result, the Foundation has more than 30 potential therapies in its drug discovery & development pipeline. Virtually every approved CF drug available today was made possible because of Cystic Fibrosis Foundation support.
Thank you for helping add more tomorrows for Faith & thousands of others. We are thrilled at how far research has come even in Faith's few short years of life & anticipate a wonderful future for her, but we must keep fundraising so the life-saving research continues. We deeply appreciate you helping us get one step closer!



***Please come see the thank you video made especially for you http://www.teamfaithfull.com/***

This year, we will once again be putting on "Speeding to a Cure" at the Roseville All-American Speedway. Last year, everyone who came had an awesome time, whether they were racing the cars or watching * we raised $4,000 for CFF! Bring your family & friends & join us -race against each other! 50% of proceeds will go towards CFF via Team FaithFULL. There will be a raffle and lunch for drivers as well. Sunday, Sept. 14, 2008.


Additionally, so long as Faith is in good health, we will be forming a group for the Edible Crawl for a Cure in October. Morgan and Stephanie went last year, along with 2 cousins and had so much fun we want to share it with you this year...food, drinks, a stoll around midtown & fun, all included in your ticket price!



FAITH'S HEALTH UPDATE:

We're SO very ecstatic to share the news that Faith's CF team appointment this month was the BEST it's been in a very long time! She's gained a few pounds, putting her at just above 60% for weight, height AND BMI! The goal for her is always above 50%, as research has proven that if they stay above this weight at age 2-4, then their FEV1 (breathing test) stays healthier at age 12! She has never been the big eater, but we do our best to pack on the pounds.


She also did a great job with her throat culture and for the firs time got to try a breathing test to check her lung function....she's still too young for it to be officially recorded for national research, but she can definitely learn how it works and have the numbers written in her chart! She really enjoyed it, too, taking a huge breath then blowing as hard and long as she could to make the chicken run to the flag on the computer. The last new test for her was checking her muscle, which was also very good for her age! It must be all that running and dancing!



Upcoming Events:

65 Roses Golf Classic 09.08.2008
*Speeding to a Cure 09.14.08

Golden Oaks Golf Classic 10.06.2008

*Edible Crawl for a Cure 10.18.2008

Sacramento Wine Opener 11.13.2008

Breath for Life Dinner March 2009

Redding Great Strides 04.25.2009

*Sacramento Great Strides 05.02.2009


Ways to get involved further: Form your own team, spread the word via email to increase awareness & donations, get your business involved by fundraising, forming a team or helping sponsor one of our many events, get your school involved with Curefinders, or shop for a cure, it's all fun! Visit http://www.cff.org/
Please contact Stephanie if you have interest in any of the above.

Disneyland March 1, 2008

We headed down Thursday & spent Friday at Disneyland with just our little family. As soon as she saw the train, we had to ride it immediately. We then waited in this long line to see what we thought was the princess show & turned out to be meeting the princesses! Faith had been SO excited to show Cinderella her painted fingernails, so it was perfect. We also went on the new Finding Nemo ride and Faith was so funny thinking she "Found Nemo!" Everytime we saw the ride the rest of the weekend she made sure to tell us she found Nemo or that she wanted to find him again.

That first night, while clearly on the 'Disney high,' Faith happily declared, "It's a magical, wonderful day!" as she opened the doors to the TV. I had to make her repeat it & ask who told her that....because she did after all, have a long conversation with Cinderella earlier. She said she told herself...so cute!

The next morning, we let her wear a Snow White outfit over her clothes and she was ecstatic! Down to breakfast we went & she got so many giggles & happy thoughts from the adults. The rest of the weekend, we had a hard time convincing her not to wear the high heels (though she did to breakfast) & getting her to take the dress off at night. Odd thing is, Snow White was one of her least favorite rides, along with the mini roller coaster in ToonTown.

I think the parades were my favorite to watch her on because she shreaked with joy everytime she saw a princess. It was too adorable. Brooke was really good for the most part and didn't seem to have much thought about where we were or what we were doing, though she enjoys people watching for sure.

The ride home was a nightmare with Brooke crying more than half the time & Faith begging to go back to our "castle." Hehehe, I'm smiling thinking of how Faith kept doing the most odd, but funny thing the whole trip...I'd bought them Teddy Grahams as a little snack for the trip & on our drive down it was night when we opened them & Faith kept wanting me to turn on the light so she could see the cookie. She'd look at it intently and state "teddy bear," then eat it. Over and over all weekend any time she'd eat those things she'd do the same ritual, even on the way home. It was too funny....maybe you had to be there.

FAITH'S 2008 VIDEO




Please click on Faith's picture to see her NEW 2008 VIDEO for GreatStrides! We'll be at the capitol in Sacramento on Saturday, May 3, 2008 from 8AM-noon. JOIN US! Sign up or donate at http://www.cff.org/Great_Strides/StephanieDavis