The Tale of Olivia's 65 Roses.

Monday, February 23, 2015

Great Strides 2015!!

It is THAT time of year again...It is time for our yearly Great Strides walk!!

Click HERE if you want to donate!

Click HERE if you want to join Olivia's Outlaws!!

Our daughter, Olivia, has Cystic Fibrosis, a life shortening disease. It is our daily battle and greatest intention to keep her strong and healthy and her lungs disease free.

What is Cystic Fibrosis? CF is an inherited, life-threatening disease that has no cure – YET. People with CF have two copies of a defective gene that causes the body to produce abnormally thick and sticky mucus, which clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, causing difficulty with absorbing nutrients. In 1955, people born with CF were not expected to live long enough to attend elementary school. Today the average life expectancy for people with CF is 37. I agree that this is extraordinary progress, but it is not enough and it is not the reality we accept for our little girl. We're getting so close, but close only counts in horseshoes. The answers are within our reach and we need your help now more than ever. It is your donations and support that have gotten us here.

This year, we will be walking in the Great Strides walk at James Island County Park on May 2, 2015. Please help me meet my fundraising goal of $5,000, by sponsoring me and/or join our team. Your generous gift will be used efficiently and effectively: approximately 90 cents of every dollar of revenue goes to support vital CF programs.

Making a donation is easy and secure. Just click the "Click to Donate" button on this page to make a donation that will support my team. Any amount you can donate is greatly appreciated. Your support will help fuel lifesaving CF programs.

Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!

Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.

Wednesday, January 21, 2015

January Clinic

Today was Olivia's quarterly CF Clinic appointment.

Here are her stats. October's numbers are in parentheses.

-Weight is 47.9 lbs (45.9 lbs)
-Height is 47 3/4 inches (47 1/8 inches)
-Height/weight ratio 31% (27%)
-O2 Sat 98% (98%)
-FEV1 103% (108%) before Albuterol 103% (119%) after Albuterol
-Sputum culture - Pending

So it was a good clinic. Her weight has been going up steadily each clinic and her lung function has stayed pretty good consistently as well. Since she hasn't cultured pseudomonas since September of 2012, they have taken her off of TOBI. No other medication changes were made. She had her annual bloodwork drawn and will hear back about that. They have set up appointments for a sleep study (because she doesn't feel rested in the morning) and speech therapy (because they think it might help with some textural food aversions). We got to meet our new Respiratory Therapist and he seems really nice.