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