My wonderful action-packed Mother's Day weekend began on Friday. Lucy and I woke up, got ready and headed to Sacramento to Dr. Grumpy's office top pick up some name brand digestive enzyme samples of, Zenpep. I have been trying to get Dr. Grumpy's office to fill out paperwork to fax over to the insurance company to tell them that the generic version of Zenpep is NOT working for Lucy! In the beginning of the week, she began to have up to 10 bowel movements a day and even had another rectal prolapse. That makes number six this year in case you weren't counting.
After we got a new stash of the real stuff, we headed over to my dad's house to visit before they left for Las Vegas and the Grand Canyon for vacation. Lucy really loves to hang out with her Grandpa! She always looks forward to my dad handing over all his loose change to add to her piggy bank.
We got home Friday afternoon, and promptly left again to go to the Dixon May Fair, the oldest fair in California. We had so much fun rocking out listening to an adolescent cover band made up of 9 and 12 year old boys. It was so cute to see Lucy "moshing" around to a Black Sabbath cover.
We rode the carousel upon Lucy's request, but the rickety horse she was on needed some oiling. It was very jerky and made her a little uneasy. Here she is before the ride began...
The the request for a pony ride came at dusk. She was so excited the entire time, so excited that I am thinking of getting her some riding lessons. Her face lit up while she was on that pony. Every time that pony made a revolution with Lucy on it's back, Lucy would grin from ear to ear and yell, "I'm riding a ponieee!"
Let's also not forget the powdered sugar, chocolate and whipped cream covered funnel cake that we shared as we were leaving the fair! Oh, yummy... and a great way to end our Friday!
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
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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.
I'm looking into riding lessons for Seth also, they say it is soothing and theraputic for children with chronic illnesses.
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