Summer 2009

Summer went by quickly, but we jam-packed it for sure!

In JUNE, Morgan's parents and I (he was out of town) attended the annual CF Parent Night, put on by Faith's Sutter care team. Representatives from many of the pharmaceutical companies and fundraising foundations, as well as the Sutter Children's center nurses and doctors attend. The team shares with us the new findings, new meds or treatments that will be in effect soon and what they learned at their annual conference. It's very enlightening and hopeful. It's also one of the only times us parents are able to converse in person because our CF kids are not supposed to be near each other for fear that the 'bad' germs will be spread from one to another. Faith had an appointment with her CF Team and all is good EXCEPT that she hasn't gained any weight over the past 3 months.

We joined the Davis family and went 'camping' for a day. I'd planned that trip 6 months earlier and of course, that ended up being the one weekend the weather turned bad. It didn't feel like summer, but was still a good time. The girls got to try fishing with daddy, Faith caught a butterfly with her bare hands, took Falon on a long 'hike,' we rented a paddleboat and roasted marshmallows. Plenty of camping stuffed into one day :)

Morgan and I also had our 10 year High School reunion. I was on the planning committee and it was wonderful to see so many friends from the past. Everyone had a great time chatting and dancing! We also went to the Enduro races where the track is soaped so the cars slip and slide. The girls have decided they like to help clean, thank goodness!

In JULY, we enjoyed attending any birthday parties, Independence Day, a Coldplay concert, a cabin in Tahoe with the Davis family and Fort Bragg with just our little family. Faith was on her TOBI month of extra treatments, so the days were already full with that, but we managed to have FUN!

Fort Bragg was beautiful and the weather was only 50-60 degrees when back home it was a whopping 107! The patio from our small hotel looked directly at the ocean and we could walk straight out to play in the tidepools and run from the waves. The girls had a fantastic time and we loved watching them. I'm sure Faith was able to breathe more clearly in the salty ocean air, too! I don't have a camera right now because mine finally gave out, so any pictures are borrowed :)

I have to share some of the cute things the girls have said lately. While eating at a restaurant, Morgan and I were commenting on how well behaved some nearby kids were. Faith quickly responded, "So, you want me to be like everyone else?" Haha, no not exactly, no way no how! Another time, I was taking her out of the car at the grocery store and she said randomly, "Mommy, old people are kinda funny looking." Brooke for some reason drops the first letter of almost every word when she speaks, like Mommy = ommy, she calls Faith "Ace" because she can't do the "F." She's also very in to trying to sing. When we were at the Tahoe cabin, Faith had already fallen asleep and Brooke was laying in her sleeping bag on the floor in the dark singing all our names out of tune, "Ommy, Daddy, Ace, Bookie!" Falon was spayed this month and Brooke continually asks, "Puppy all betta now? Her tummy all betta, huh? No more owies?"

In AUGUST, we attended an friend's wedding in Walnut Creek without the kids, camped at Meadow Lake, went to the circus and the enduro races again. Meadow Lake is near Truckee, so not all that far in distance, but the roundabout way to get there pulling the trailer makes it over a 3 hour drive. We brought the rhino and had a great time with just the kids and the 2 dogs. It's a popular jeeping area, but that weekend was pretty quiet and there are no motors allowed on the lake. It was beautiful.

The circus was a blast for the girls and our seats ended up being practically front row. Faith commented, "Everything is so magical!" I tell you this because I think it's almost unbelievable, but cotton candy and popcorn were $10 each! Of course, we still had to buy it though :)

The Enduro races were on a very hot evening. We sat in the shade and brought a little fan, but still we were all sweaty. Faith ate some ice cream while we took turns fanning her. Her preschool teacher was sitting right behind us so she was very excited about that and the car she picked to be 'hers' won!

GREATSTRIDES May 2009

Shortly after the last post, Faith became ill with a nasty cough. We took her to the pulmonologist and she was put on antibiotics right away and advised not to attend the annual CF Foundation Greatstrides walk if it was raining. So, a cough for Faith doesn't get your ordinary treatment...it requires us to increase her Vest time to 3-4 times/day (totaling an hour+), more oral meds, extra 4 puffs of inhaler each day, a minimum of one breathing treatment to reduce inflammation/CF DNA mucus, but up to 4 (10 minutes each), and it's a TOBI month for her, which means that already in her routine for the month she's got (2) 30 minute breathing treatments...for a total of about 2hr30min of treatments EVERY day. Yuck!

I was scheduled to help set up early the morning of the walk and it seemed some meteorologists said it would rain and others said it wouldn't. I stayed positive and allowed her to come at start time, but it did begin to rain. Thankfully, Grandpa Marlin was there to swoop her and Brooke away and take them home. The rest of Team FaithFULL stayed to walk and enjoy the entertainment.

The overall turnout for the walk was drastically reduced due to the rain and also the economy. Our grand total this year was over $6200, not too shabby for a rough year! In total, Team FaithFULL has raised OVER $50,000 since Faith was diagnosed with Cystic Fibrosis. Thank you all SO very much for your love & support!

Once her 2 weeks of antibiotics were up, we again visited the pulmonologist to decide if her lungs were clear or if she'd need to be admitted to the hospital for IV's. Though a light cough resumed, her lungs were clear and yet again, she's skipped the hospital, phew!

The girls are loving Falon, who is now 3 months old and learning to be good. We went to Sand Mountain toward the end of the month and Faith had a preschool graduation (she went this year only one day/week and will go 2 days/week next year)!

Disneyland 2009

Disneyland was magical and fun! We chose to drive down late Friday night for two reasons: so that the girls could sleep while we drove and so that Brooke, who doesn't do so well in the car, wouldn't have too much of a fit and throw up in the car, which she usually does on car rides over 20 minutes. Driving until about 3:30AM and ending at a hotel over the grapevine, it was a success! Brooke actually did very well staying up until 11PM in the car watching Baby Einsteins.

The next morning we had time to waste before checking in to the timeshare, so we headed for Santa Monica Pier. It was enjoyable to people watch and have some lunch. We took a long stroll down the beachwalk and played some in the ocean, which was packed!

We met up with my mom and Ezra later on at the timeshare and waited for an extra great room...and it was! My good friend from Hygiene school met up with us at Cheesecake Factory for dinner, then we headed back to our mini porch to watch the firework show!

The next 4 days were spent at Disneyland and CA Adventure. My mom was able to meet up with a childhood friend as well, which we all enjoyed. Brooke wasn't so sure about most of the rides and seemed to anticipate the scary parts of each one. She did enjoy Small World (much to our dismay) and the Playhouse Disney show. Towards the last day they both warmed up more to the idea of taking pictures with the characters and Brooke always tried to hold their hand.

Faith was a complete joy most of the trip. The second night we watched the fireworks from Main St. in Disneyland and she was flabergasted. I was holding her for the first half and her face was lit up and soaking in the magic. She kept squeezing my neck tight and saying, "I love you, Mommy! Mommy, I love you!" I think that was her only way to release the joy inside b/c it was bursting out of her! When Tinkerbell came out flying around the castle it was over, icing on the cake! Grammy was holding her by now and Faith grabbed her by the face and from 2 inches away was squealing, "Grammy, it's Tinkerbell! It's the REAL Tinkerbell!"

I skipped ahead of myself because our last ride that first night was Soarin' over California. We'd told Faith a little about what the ride was like as we were waiting. As the ride lifted us up high we were in the dark, so the first 'scened' it opened to when we started 'flying' was like we were in the clouds. Her face lit up with the biggest smile and bright blue eyes, she opened her arms and outstretched her fingers wide as if she were feeling the clouds....she was in awe. It was priceless.

She also loved the Matterhorn, always shouting "Woohoo!" and Space Mountain she kept saying she really liked and went on three times, but her face didn't always look so excited. We also did the "Build-a-Bear" workshop and Faith picked out a pink monkey, gave it mouse ears and a Tinkerbell shirt and named it Tinkerbell as well. She sleeps with it as I write. Oh, the other ride she loved was Peter Pan (my favorite).

The single perk we've found to having CF is that we can get a special pass which allowed our group to go into the fast pass lane or straight up through the exit on most rides. The reasoning is so that she's not stuck in line next to all kinds of people with who knows what bugs all day long, as well as the heat exposure in the weather became more limited. "Regular" people aren't always excited nor understanding of why we get to pass them up, but Disneyland is the place where we get to play that CF card and by golly, we will!

The ride home went MUCH better than expected considering it was a mid-day drive...and Brooke only vomitted once :) Weren't you wondering?
~Stephanie

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!

www.TeamFaithFULL.com 2009

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....