The Miralax seemed to help within a few days because Faith grew an appetite. Despite having the flu vaccine, we're pretty sure that Brooke and I had the H1N1 flu (those vaccines weren't yet available to us) and Faith was put on Tamiflu along with us as a precaution. We stayed away from she and Morgan as much as possible and they escaped with no illness. As sick as the two of us were, I can't imagine her having that flu, it was ugly. She did end up with a few stuffy noses and ended up staying home from school for what seemed to be almost half her scheduled days due to either her illness or other kids' sick at school. We're grateful for her teacher who gives us a heads up when there's something going around.
As you can see, the homemade unicorn and Rainbow Brite costumes worked out just fine and we had a great Halloween party!

Oh, Poo! Sept/Oct 2009


Faith has had an incredible lack of interest in food lately. She enjoys helping cook and often says something, "smells so gooood, " but once it's in front of her, she avoids it completely. We saw her pulmonologist this month and the concern for me was that the scale showed she hadn't gained weight at all in almost 6 months! Her arms are starting to thin out and she's grown a little in height. The Dr. did a throat culture and Faith was a little nervous at first, but a total pro while I counted to 3 during the throat tickles. Her lungs sounded clear, which is always a good thing to hear ;)

So, our never-ending quest to put weight on little Faith continues...
October 1st she had a 3 hour appt with the CF Team. I voiced my biggest concern, which is her lack of hunger. We talked about what she's been eating, her height and weight were more meticulously measured...turns out that she actually had gained over a pound in the last three months, phew! The BMI is above 50%, which is always MY goal for her. The throat culture results came back clear, just the normal flora of bacteria. We will continue all of her regular treatments.

The nurse felt her slightly distended belly and felt like we should get an x-ray of Faith's abdomen to see if something is going on in the intestines, which could cause her to not want to eat. So the next day after her dance class we headed for the xray. My mom met us to keep an eye on Brooke (thanks so much, mom!). I explained to Faith that nothing would hurt, but a lady would be taking a picture of her belly with a really big camera and mommy would get to stay with her the whole time so there was nothing to be scared about. I prefer to always tell her what is going to happen: shots, culture, treatments, etc so that she trusts me and knows what's going on. In this case I knew because she had a chest xray a couple years ago.

She started to get a little nervous when putting her gown on, but I reiterated the truth. When it was her turn, she got up on the table and did a fantastic job staying very still with a smile on her face for 2 pictures. 4 days later the Dr. called with the results. She doesn't have a complete blockage, but there is a large 'build up' of stool in her right colon, still allowing regular amounts to pass by. She said older kids often complain of stomache ache, but very young children often just stop eating. A complete blockage would mean a hospital stay, but since this is not, we first begin treating her with a type of laxative that will help break down what's in there to get it out. This may or may not become an addition to her regular medications. For now, it's a matter of figuring out the balance Faith needs. She understand well what is happening and even retold the info to my mom mthe next day quite precisely! We are truly greatful that our CF Team caught this before it became a bigger problem and that the treatment is fairly 'simple.'

So far this Fall, Faith is really loving school and dance class. We just decorated for Halloween and plan to have a party this year. Faith decided she wants to be a unicorn....not sure how that will turn out! Brooke will be rainbow brite. We'll be heading to the Pumpkin Patch tomorrow and plan to get these last few beautiful weeks out and about before the winter hibernation for us arrives. We were warned it's going to be a harsh winter for getting sick and we've already all gotten our flu shots!

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 :)

video
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!
View this montage created at One True Media
www.TeamFaithFULL.com 2009