Join us at Great Strides!

Great Strides is a walk to raise awareness about CF, support CF families and friends and raise funds for Cystic Fibrosis research.

We're inviting everyone who is able to join us at Wheeler Farm on Saturday May 16th at 10:00 am. Besides helping out you're going to have fun and so will your kids if you bring them.

Here's the information copied straight off their flier.

Here's some fun we're having at the Salt Lake walk on May 16th:

Free food and drink from Texas Roadhouse, Einstein's Bagel Co., Frito Lays, Fiji Water and Dannon Yogurt.

Have some fun with the band Str8 Up, Best Buy Rock Band Live, Home depot Kids Club, Skate Crew, Massage Therapist, Premier Productions Dance Group and more!

Don't forget to bring your money for your Sun cleaning products, sold at low prices for CF!

Appearances by Miss Utah, Miss Teen Utah, Leo Real Salt Lake, Grizz (Utah Grizzlies), Bumble (Salt Lake Bees), and Swoop from the UofU!

All the walks will be just as fun as SLC! See you there!

CF Foundation (801) 281-1886
Nancy, Ashley & Laura

What Now? Read on...

Make video montages at www.OneTrueMedia.com

We're doing great. We have felt the love of God through everyone around us and we are truly blessed. Our day to day life isn't significantly different. We have a slightly longer morning and bed time routine and some medicine during the day, that's all. Rather than focusing on worst case scenarios we will remain optimistic and grateful. Life is wonderful and we're going to enjoy it. We're also going to use our new outlook as an opportunity to learn all we can and to spread awareness.

Join Us
Part of what we're doing is participating the Great Strides Walk at Wheeler Farm Sat. May 16th 9:00 am. This is a great opportunity to get together support each other and have a fun little walk with the kids. Together with Clare's cousin Elliot we're forming a group called Elliot's Angels and Clare's Crusaders. It's FREE of charge. Donations are accepted but not nessasary. If you can join us registration is online. Here's a link: http://www.cff.org/Great_Strides/ChrysiDavis

We'd love to have as many people as we can there. We're also makeing t-shirts for those who would like them. Let me know if you're intrested in one.

Clare's Aunt Amanda has put together a really great video about her and Cystic Fibrosis. There's a short clip about Clare (top) and there's a short clip (about 4 min) about her and Elliot combined (below). It's a great way to learn a little more about Clare, our family and CF. Please take a moment to watch one.

Thanks to all for your love and support and prayers. You strengthen us.

Elliot and Clare

Make an on-line slide show at www.OneTrueMedia.com

Hard News .... Plenty of Hope

Friday was a long day. It all started weeks ago when Clare fell down the cement steps outside. Her head looked so bad that we took her to the ER and got a CT scan. No problems form the fall but her sinuses looked VERY bad. They sent us the the Ear Nose Thought Dr. The ENT Dr. scheduled an MRI and a Sweat Chloride Test.

Friday we arrived at the Hospital at 7:00 am for the MRI stayed for the SC test and finally got home just after noon. 4:15 pm we got the call we didn't want. Clare has Cystic Fibrosis. That was some of the toughest news I've ever received.

The good news is we've found it fairly early. There are great local Dr.s and treatments and they are making great strides in researching new treatments. Although we don't know much about Clare's type it doesn't appear to be extremely sever. She's still healthy, we found this because of a head injury. We can treat it and try to keep her healthy.

Life will change for us we won't find out how much until next week. (Which will probably be a long one.)

About Cystic Fibrosis (CF)
CF is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes germs to get stuck in the airways, which causes swelling and infections that lead to lung damage.

Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food and get important nutrients to help people grow and stay healthy. People with CF often need to replace these enzymes with medicine they take with their food, which helps them digest and get proper nutrition. For more info go to http://www.cff.org/
Life expectancy is 35 to 50 years. We're going to expect longer.

A difficult day and a wonderful loving family.

As life goes by day after day, it is easy to fail to notice the little sweet things that are going on around us. Today gave me the reminder about how precious life really is, and how vulnerable we all are. This morning at 7am Chrysi brought Clare to the hospital for her appointment to have an MRI to check up on her clogged sinuses. 10 hours later we received a phone call from the doctor diagnosing Clare with Cystic Fibrosis. We are not unfamiliar with the disease, since Clare's cousin who is 3 weeks older than her also suffers from the disease. It is wonderful to know that we have such wonderful support from family and friends. We love our little Clare Bear.

Whirlwind trip to China!

Well the last ten days have been both amazing and difficult. I had the opportunity to travel to China for a business trip, but I wasn't able to bring my two favorite girls with me. Traveling for 20+ hours on an airplane can get very annoying very quick. Unfortunately there was little time to do sight seeing, but I did enjoy the few opportunities that I was given to enjoy the experiences of a foreign land. Instead of explaining every detail of the trip, I have attached the following slide show of my adventures. I spent 2 nights in Shanghai and 5 nights in Kunming, which is in the south central part of China above Vietnam, Laos and Thailand. It has made me realize how much we take for granted everything that we have. People work so hard over there just to get by. What an amazing experience.

Adventures in Moma Land

Has anybody else ever hid snacks so that their cute child would stop asking for them every time they see them? Clare doesn't talk yet. If she wants something, she reaches for it opening and closing her little fist and begins to hyperventilate. It's actually both cute and not cute at the same time. I got her some freeze dried yogurt snacks and was giving them to her in the computer room yesterday. I hid the bag when I felt like she'd had enough. Now I can't find the bag. I'm hoping I can remember in a couple hours or days rather than a few months or longer.

I always like to put a picture with my blog so, here she is! Clare began doing this on her own this morning. Putting the hat on and off and pulling it over her face.