Wednesday, April 22, 2009

What Now? Read on...


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

Saturday, April 11, 2009

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.

Friday, April 10, 2009

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.