2011 April

April 2011

It's been far too long since I've made an update...last summer. So I'm planning to go back and add a few in. We're gearing up for the Cystic Fibrosis Foundation's Greatstrides walk May 21, 2011 at the capital and we'd love for you to join us and/or make a donation. It's a casual walk on beautiful grounds with lunch provided and entertainment for children and adults! To sign up or donate please go to www.TeamFaithFull.com and be sure to check out Faith's latest VIDEO!

Overall Faith is doing quite well. She just turned 6 in March and has lost her 2 front lower teeth which she is ecstatic about to say the least. She also has a small cross bite and now wears a retainer....and of course being that it's Faith, she loves that too!

At her last clinic appointment she was given a prescription for hypertonic saline. At our clinic, kids start this inhalation therapy (like inhaling salt water mist) at age 6 because research has proven that it significantly aids the lung function and reduces the number of lung infection in people with CF. So she uses a quick inhaler of a bronchodilator to open up her airways prior to these two added 15 minute breathing treatments to her daily routine. Thankfully, Faith is a trooper and hasn't really complained about it at all. It made her cough alot in the beginning, but she's more used to it now. We're trying to get another Paritrek ordered, which is a portable nebulizer so she can walk around or be in the car or wherever and do her breathing treatments. We had one before that gave up on us....always on the go....she used it camping around the fire and everything! CF can't slow us down much!

2011 March 4

6 years ago this morning I was honored to bring an amazing little girl into this world...allowed to snuggle and memorize her face for a few minutes before she was taken to NICU. Faith, you have taught me a love I never knew existed and you have touched many lives. You are beautiful through and through, strong, compassionate and ALWAYS see the glass half full. You teach me new things EVERY day. I will be by your side and love you always. I'm glad you got beach time today! Happy Birthday precious!

2011 February

Although she gets a little nervous, Faith has been enjoying her art and science class on Fridays. Her 6th birthday is coming up next month! We talked it over and decided to purchase a handful of Disney on Ice tickets and take some kids with us to enjoy the show in celebration of her birthday rather than having an actual party this year. We loaded the car with cousins and drove to Arco Arena to have a great time. Popcorn, cotton candy, princesses and big smiles......she was in heaven!

I am in awe each year that passes that Faith has yet to be put in the hospital for reasons related to cystic fibrosis. She is such a strong little fighter with a heart of gold.

2010 August

Faith's given us a little scare recently. It is rare for her to get a fever, but she's had one and she's been complaining of a tummy ache, which moves around slightly to different locations. We called her pulmonologist who ordered an xray right away. So we drove to Folsom to see him and Faith did a great job holding still for the xray, which we were given to take right back to the pulmo. Everything looks clear, except for "normal CF stuff." So, that was a big relief, but of course my mommy ears picked up on the "CF stuff" and my mind races with thoughts of what exactly did that mean? Is there already alot of scar tissue in the lungs? Can he see mucus and striations already? I know there's plenty of depth to that small statement, yet he doesn't elaborate much. He thinks she's had a blockage again. For now, we will continue to monitor her and give extra treatments as well as Miralax twice a week to be sure she doesn't get 'backed up' which has caused her tummy to ache in the past and could lead to major problems...another CF issue.

Here's a cute picture of Faith, Brooke and cousin Jonas playing the Wii.....Faith LOVES Super Mario 3!

$9300 so far! And a dance recital...

As I'm working on emails, etc for "Speeding to a Cure" I've noticed that Team FaithFull has raised over $9300 as of today! More than I expected in such a tough year, but FABULOUS! All the money we raise at the race car event in September will go towards that final total also. Thank you all again who have donated, fundraised and spent your time being involved!!!

Faith had her dance recital over the past weekend. It was adorable. She was front near center and did a great job. She's decided to take a break from dance to 'pursue' other interests like gymnastics, relaxing and playing the Wii for the rest summer in between our out of town trips.

Ballerina & a Bumble Bee Boogie dance

Brooke swimming & Faith playing Wii Fit

Breathe Freely, Conner Man

My heart and eyes cry today for seven year old Conner who passed away Thursday, June 24, 2010. He battled cystic fibrosis and prune belly disease, which meant he essentially had no muscles to cough....and with CF, that's a terrible combination. It's evident that he was such a fighter and joyous child yet cystic fibrosis has taken another precious, innocent life.

For many months now his mother, Sarah, has allowed her soul to bleed into each word as she shares their family's story. Thousand of friends and followers of her blog have been given the raw truth about CF, love, life & belief and though we don't know her personally, after reading the posts, it feels as though we do. Conner is survived by his loving parents and 2 younger brothers.

As mentioned before, at the Sacramento Greatstrides walk, Team FaithFULL (along with many other teams nationwide) wore red on our shirts to honor Conner with his favorite color and show our support. Today his family laid him to rest and all the world who knew of him wears red and cries out. May his famiy find some peace today that he is no longer in pain and may their precious memories never ever fade. Breathe freely Conner...the fight against CF will continue and your spirit lives on! Squeeze your little ones a little tighter today, love them a little more...

"Perhaps they are not stars, but rather openings in Heaven where the light of our loved ones passes through."

www.NotSoBrightandShiny.blogspot.com

Regis & Kelly even wore red for him on their show today! Here they are. I couldn't find a clip of them talking about Conner or CF, but am told that they did.

http://www.youtube.com/watch?v=Pe5st-9UcI8

America's Got Talent!!! CF Awareness!

So exciting! America's Got Talent TV show featured a 7 MINUTE clip on Christina & Ali ages 13 and 20 BOTH with cystic fibrosis! An interview with the sisters revealed that all 4 of the siblings in their family have CF and the two of them sing. It was excellent exposure for CF awareness and although we didn't see the show the night it aired, I heard about it from MANY other people who did. Then, saw the link all over facebook. For those of you who missed it, check it out. The younger one is especially good!

http://www.youtube.com/watch?v=7s7CtPGeEbo

Perfect Flower Girl!

What a doll. I mean, there's nothing more to say!

Faith had a fabulous time in Pismo Beach for the weekend celebrating my good friend, Catheline's, wedding on June 21, 2010. Brooke stayed with Grandpa Marlin and Oma Joan and my mom and Ezra came down for the wedding and helped out tremendously with Faith while the big girls did wedding stuff.

Faith got to go the beach in the day and nighttime, ride a train to Santa Barbara, eat clam chowder multiple times, take a gazillion pictures, get nails/toes painted, hair done at the salon and get all dressed up to be a flower girl!

She was SO happy and beautiful!

Quarterly CF Team Appointment

Oops, I almost forgot the appointment until they called to remind me! I'd never written it into my all encompassing calendar of events, but we made it work.

THANK GOODNESS our favorite nurse, Kasey, is BACK from her leave! She looked beautiful and refreshed and noted that she's ready to focus on work. We love her. I first met her the day I was in labor. She sat with me, cried with me and unbeknownst to us all then, that was the first day she became a part of our family because 2 weeks later Faith was officially diagnosed with cystic fibrosis. We've seen her at least every 3 months for the past 5 years.

Morgan couldn't make it to the appointment due to work and my forgetfulness. My good friend Tiffany watched Brooke so I didn't have to take both girls by myself. Faith did well as usual. She stayed busy on a workbook or playing games on the phone. Her lungs sounded clear, a throat culture was taken and the bad news....she's lost a pound. Ugh, again. Weight gain is always our issue. She just doesn't have a big appetite as it is, but then add on that she was on antibiotics for 4 weeks and it's warm outside and it doesn't help matters. Plus, her high calorie drink that she usually has daily (375 calories with breakfast) we are no longer receiving due to a change in insurance and pharmacies. Looking into options to get them back....

That weight loss puts her right back to the 50% range for BMI....to me that's a C- if we're grading it. Not her fault. Not anyone's fault really b/c we always try very hard to get her eating, but I still take it personally and think what more can we be doing?

Preschool Graduation

Faith's been attending the same preschool for just over 2 years. I've sent her there between 1-2 days each week for a little extra socialization. Over the past year I've noticed it's really helped her 'shyness.' Not always, but often she will now talk more openly with people and it's great to see. Really, it's great to be able to share her with other people (I wanted to say 'to share her with the world,' but maybe that's a bit overboard). Faith is such a joy, a treat, and a delight to be around. I feel like, "How could she NOT make the world and anyone she meets happy? All she has to do is start talking or even smile a little with her big cheesy grin and bright blue eyes." When she does or says something so sweet that is just so her I find myself all teary with happiness. That's one of the best parts about being a mom.

So I was talking about preschool...Faith doesn't need to to any treatments there b/c she only attends for a few hours at a time. During snack she does take her enzyme pills, but after the other kids were told about them the first day, they didn't really mind and no one treats her any different to my knowledge. Miss Debbie is incredibly thoughtful and cautious to warn us when other children have been sick and Faith loves her dearly. The last few weeks of the school year, I could tell she was ready for a break b/c she would be pretty tired when I picked her up and often complained that she got very tired when they took long walks (still good for her). In true Faith fashion, she ALWAYS had a bunch of weed, er, "wishing" flowers for me that she'd collected along the way. I wonder if she'll be sad when we take Brooke to the 'bus' for preschool next year and she doesn't get to go. I also wonder how Brooke will do. Faith will be homeschooled. I'll have to write more about that as it gets closer.....kindergarden, I can't believe it!

The graduation went well. The kids all gave their moms a flower as they entered to the 'graduation song' and sung us a bunch of songs that they'd learned over the year. Towards the end, Miss Debbie called the kids out one by one to give them their book of creations that the teachers compiled, which is always fun to see b/c everything isn't sent home during the year. While she was speaking, there was a rainbow directly behind Miss Debbie, not sure if she ever knew it :) Great moment. Everyone celebrated with ice cream afterward and Faith was very happy. Morgan and I enjoyed a date night at the Tim McGraw concert the next night :)

Disneyland 2010

Conveniently, there's an annual CDA dental convention right next to Disneyland. The cost for our whole family to drive down, stay and play was little more than myself flying down, renting a car and getting a hotel for the weekend. So that was my excuse :)

The girls did well on the road down...I think the final total of "Are we there yet(s)? was about 28. Yes, we counted. There are VERY few perks to a chronic illness like cystic fibrosis, but there is a BIG one when it comes to the happiest place on earth. Faith is allowed to have a pass that gets her and up to 5 guests either to the front of the line, up through to fast pass or even up the exit in many cases, on EVERY ride. A major bonus at Disneyland. All we have to do is renew it quickly each time we go. It's free and no further questions are asked for the rest of the trip as to why we have it. The greatest thing is that we don't have to wait in long lines when it's hot or be fearful of the people and the germs standing next to us in line. Because the girls are so young, we love that we're able to get through the park and rides much faster than we would without that pass. So THANK YOU DISNEY!

Despite my warnings to Morgan about ruining the whole trip for Brooke if we didn't start off super slow, our first ride was Soarin' Over California. Faith squeeled with the excitement that we were flying and Brooke's whole body shook with fear as she cried the whole time while trying to get out of her seat and into my lap...and that was the beginning.

Intermittently throughout the weekend I went to the convention to take a few continuing education courses and pick up some samples. Morgan would take the girls swimming and once even braved D-Land alone for a few hours with them! Brooke never really did like the whole concept and for all 3 days we went. She didn't want to talk to or take pictures with most of the characters, would run away when we tried to take her picture, didn't want her face painted and kept wanting to go home. At every ride she'd ask if it was dark or flying or had stars and then say she was scared. The chosen few rides that made her happy list were Small World, Buzz Lightyear, the carousel and Toy Story (one of our favs as well). It sounds so awful, but it's not like we didn't try to help her enjoy the place. Faith liked most every ride, but wasn't too happy with Tower of Terror this year. The new Turtle Talk with Crush was a brief yet cute new show we all liked, too.

On the road home, Brooke refused to take her Dramamine so she wouldn't get car sick...so she got car sick...twice. Overall we had a good trip, but won't be crazy to go back too soon unless we have another excuse.

Of course it's on a Friday afternoon...

The next few months will be a bit of a whirlwind of activities, though I'm not sure it ever really isn't. After the excitement of the walk, we went to the Roseville speedway to watch Uncle Pat race around the track. It was incredibly hot, but Faith was ecstatic to see that he won a trophy! We were sure to pump her with fluids, fan her and even get an ice cream treat, but her little face was covered in the salt of a sweaty CFer as you can see from the picture. One of the obvious symptoms of a person with cystic fibrosis is salty skin, you can lick their forehead (ya, why not?) and it's immediately obvious.

Later that week she got to ride in a huge stretch limo for her good friend Olivia's birthday.

By Friday afternoon, of course it's on a Friday afternoon, Faith was holding her ear and crying about it hurting. She only rarely cries about pain so I figured it was serious and called her pediatrician. I pulled the CF card b/c he's told us before if it's important that she see him he'd make time and he did! We hurried over and he confirmed that she actually had a DOUBLE ear infection, poor baby girl. She literally finished the previous antibiotics exactly one week ago. There's always fear in my mind when she's put on another antibiotic b/c I don't want the 'bad bugs' to become accustomed to them, thereby allowing the bugs to become strong enough that antibiotics won't work. At this point though, what's important is that she's healthy and out of pain. A prescription for 10 days of Augmentin and an ear drop pain reliever and she was feeling better by the next day which was Stephanie's good friend Catheline's wedding shower for which Faith is the FLOWER GIRL! By the end of the party, she'd decided to take a nap on the couch for a needed rest.

Mother's day was the following day and after church I was treated to a pedicure with the family girls, then we walked around the Fountains. At school, Faith had made an adorable flower arrangement out of a plastic bottle, sand and paper flowers...it sits in my closet so I see it every day :)

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.

Thanks to www.WhyNotExpressIt.com & Crosspointe Community Church

www.WhyNotExpressIt.com has been generously donating our awesome team walk shirts with Faith's picture on the front for SIX years now! Each year is better than the last! They also print the back of the Sacramento Greatstrides t-shirts that walkers receive for raising $100+ and have done a fantastic job of that for the past few years. Thank you for your kindness and generosity John and Patty Gamble (owners) for many years of support!!!

www.CrosspointeLincoln.com

We have attended Crosspointe Community Church in Lincoln since it's opening about 18 months ago. Casey is in the band and a few of us girls help out in the back with the children each month. Almost every month they do a "Change for Change" program, highlighting a worthy cause for us all to give what we can to. This month, Pastor Steve and the church family were kind enough to have Faith's video played at two services...mentioning that Faith who also attends the church has cystic fibrosis. I'm not sure how many people there knew about it before, but now everyone does. Not only did the church as a whole raise hundreds of dollars, but also MANY people ended up coming out to walk with Faith on May 1st as well! Our gratitude runs deep for Steve, Julie and the Crosspointe family. Thank you for bringing more awareness about CF and for helping us in our efforts to find better medications and an eventual cure. We feel your love and prayers and are fully aware of their power. Thank you from our warm and fuzzy hearts to yours!!! Local friends and family are absolutely more than welcome to join us on Sundays at 10AM, every Sunday! The church will be changing locations to Rocklin this summer.

Pulmo visit and Antibiotics

Faith's had a slight cough for a few days now. It started with a little nasal congestion and has been working it's way downward despite extra time on the Vest and a little Xopenex in the inhaler here and there.

I went ahead and made an appointment in Sacramento with the pulmonologist for her to be checked out...better on a Thursday than the weekend. The Dr. felt similar to how I had. Either her body would rid of the cough in the next 2 days or it would get worse, so it was decided to go ahead and give her 2 weeks of oral antibiotics. Faith requested a pill form this time and gave him a high five, to my surprise! So she should be done with this the day before the Greatstrides walk! Last year at this time she was also ill and had to leave the walk early with Grandpa Marlin when it started raining.

Ugh, while leaving the appointment, I found out that our favorite Dr. who's on maternity leave is not coming back! SUPER upset about that. She was a wonderful person and as a Dr. really listened and responded well with great bedside manner. We will be very sad to no longer have her. She had our trust. Our favorite nurse, Kasey, has also been out for a few months, but is due to return sometime in May....we cross our fingers for her to come back refreshed and ready to take on the tough job battling CF with amazing patients like Faith :) She is a truly wonderful rock in our CF Team and family.

Antibiotics, let's kick it!

4.15.2010
Why have the last few Easters had yucky weather? The girls woke up and found that the Easter bunny had left them eggs all inside the house, just in case in rained outside, so they wouldn't get wet. They squealed running around the house to find them all. After church we headed to Nana Fonda and Pampa Marc's house to hang out and play some games.

By the 7th Faith had a stuffy nose and a couple days later it had turned into a cough so we started the vest treatments twice a day. It's not her favorite thing to do them more than once in the day, but very important that we try in order to reduce the mucus thickening up and leading to infection. She never seemed to actually have a cold, but something was definitely going on....like some CF congestion is the best way I could describe it. On the 15th I'd decided it'd been long enough and she needed to be seen by the pulmonologist. Normally we don't wait this long. He said she was right on the fence as to whether she'd get over it on her own in a couple more days or not. In the long run, he felt it best to nail it with some antibiotics to be sure the congestion would go away. So two weeks of antibiotics starts now.

We got to go to the zoo one weekend, Steph's been doing some volunteer work on the upcoming greatstrides for CFF walk May 1 and Faith is officially registered for homeschooling for kindergarden. That should be an adventure. She's already been asking us to teach her to read and upon recommendation from her preschool teacher has read a few small starter books!