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."

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.

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!

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 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?