What a great day at the Sacramento Great Strides walk yesterday! I was amazed at the turn out! Nearly 40 people, family and friends, walking for Lucy! I got all misty-eyed multiple times yesterday just from the LOVE pouring out of this team! Look at all of us decked out in our purple shirts with Lucy's sweet face on the front...
And TEAM LUCY on the back (and of course, everyone carried red balloons for Connor)... I couldn't have asked for more perfect conditions to make for a better day! When people refer to "sunny California" this is the stuff they're talking about! It was a sunny, warm May day at the Sacramento state capital. I was honored to meet other people in our CF community yesterday. Those wonderful, supportive people that I have been speaking to via the internet for over a year now. These people, other CF mommies and adult CFers, are so special to me in so many ways! They know exactly what I am going through everyday. I was able to finally meet my friend, Tony. He is an adult CF warrior who lives in the Sacramento area. We have been internet friends for almost 2 years, so it was nice to finally put a face to the name! The outpouring of support and love from my friends and family is what keeps me going. Without these people in my life, I would certainly crumble under the pressure. They hold me up just by being around. They make me laugh, they make me cry, and they stand up with me to love and support the one thing that means the most to me... LUCY! A huge THANK YOU to all those that donated to help find a cure for Lucy, and to those that walked with us yesterday. I love all of you! I am not even close to being done this year. The fundraising will continue through the summer! Stay tuned!
My name is Kacie. I am a 29 year old single mom to Lucy. She was diagnosed with Cystic Fibrosis at 2 weeks old in 2008. Along with maintaining Lucy's wellness, I practice the art of attached parenting and my thoughts on the subject might come up from time to time in my blog. Lucy and I bed share, are still breastfeeding after two and a half years, I wear Lucy as often as possible in our Moby wrap, and I made my own organic baby food to keep up with Lucy's high calorie intake. I love the beach, being outside, hiking and cooking. I am a part-time bartender living in northern California doing my best to raise the happiest, healthiest kid I can!!
Feel free to email me anytime. All emails will be answered!
knt81@aol.com
Fan Club...
CF In A Nutshell...
Cystic Fibrosis is a life-shortening, inherited disorder that affects the way salt and water move into and out of the body's cells. The biggest effects of this problem are the respiratory and digestive system where thick mucus blocks and lines the organs (primarily the lungs and pancreas) causing irreversable lung damage, poor digestion, poor absorption of food and really salty skin.
Lucy has Cystic Fibrosis and there is NO cure!
Donate To CFF & Team Lucy...
Lucy's Genetic Mutation...
Double Delta F508
Lucy's Current Meds...
~Vitamax/Source CF chewable tablets (1 tablet a day)
fat soluble vitamins A, D, E and K
~Bactrim suspension liquid (1.5 teaspoons twice a day/two weeks)
An oral antibiotic to fight current lung infection.
~Culturelle probiotic capsules (twice daily)
Same culture that lives in yogurt, just higher doses. Helps to maintain a healthy digestive tract.
~Miralax (one capful 17 grams every day in juice)
laxative and prevention of rectal prolapse recurrence
~Zenpep (6-7 with meals, 4-5 with snacks)
digestive enzymes to break down and absorb fats
~Prilosec pill form 1-2 times daily
PPI to decrease stomach acid for better digestion
~Pulmozyme by nebulizer (1mg once daily)
inhaled enzyme to break down and loosen mucus in lungs
~Xopenex by nebulizer (0.63mg 1-2 times daily)
inhaled levalbuterol for inflamation of the lung
~Tobi by nebulizer (1 vial twice a day; one month ON, one month OFF for 6 months). Currently OFF!
inhaled antibiotic to battle pseudomonas ~Hill-Rom Vest
(1-2 times a day for 30-60 minutes total)
chest pounding or 'thumping' helps loosen lung mucus. Settings range from 8hz to 10hz at a pressure of 4-5.
~Salt (lots of sodium supplemented all day [about 1/4+ teaspoon], in juice and food)
sodium chloride is not regulated well in the body of a CFer causing dehydration and thicker mucus membranes. It must be replenished.
LOVE the red!!! I can't wait until our walk next year, we missed this one because shes in the hospital...but next year are we doing it BIG.
ReplyDelete