The Tale of Olivia's 65 Roses.: 2015

Wednesday, September 2, 2015

September Clinic

We had clinic today which we had requested because Olivia's cough is so bad. Here are her numbers from the last two clinics:

9/2/15

50.6 lbs

49.3 inches

99% o2 sat

27 % BMI

1.40 liters FEV1

7/1/15

48.9 lbs

49.2 inches

98% o2 sat

18% BMI

1.42 liters FEV1

Her lung function was down a tiny bit, but she's had a really bad cough so we're really happy it was barely down. She has been put on 2 weeks of antibiotics for her cough, so hopefully that will eradicate the issue. Her respiratory therapist also measured her and ordered her a new vest. She chose a purple one this time.

Her weight went up 1.8 pounds so her BMI went from 18% to 27%! I'm so happy with this increase especially since she started back to school and has been dancing a minimum of 4 hours a week. We just need to keep up the good work!

They came in and asked if we are interested in being part of a clinical trial for Orkambi. It's being tested for people with a single copy of delta f508. We will definitely be giving consent and then hope she gets chosen.

Well, that's all that occurred today. I will leave you with a few pictures.

Hannah loves her big sister soooo much!

Wednesday, July 1, 2015

July CF Clinic

Olivia had her quarterly CF Clinic today. It was not bad but it was tiring as it always is. Here are her numbers from the last 2 clinics.

7/1/15

48.9 lbs

49.2 inches

98% o2 sat

18% BMI

1.42 FEV1

1/21/15

47.9 lbs

47 7/8 inches

98% o2 sat

31% BMI

1.34 FEV1

So as you can see her lung function is good but her weight is an Issue AGAIN. So they talked to her about it for a little and talked about eating better and what foods she likes or would give a try. They told her that if this trend continued she would need a g-tube. I've told her that before but I think she thought I was using it as a threat so to have them say it to her freaked her out.

Normally I post a percentile for her FEV1, but it was explained to me today that her liter number is a more important and accurate thing to watch. So from now on I will be posting those numbers instead. Definition of FEV1: Forced Expiratory Volume in the first second. The volume of air that can be forced out in one second after taking a deep breath, an important measure of pulmonary function.

We will find out the results from her sputum culture next week. We've been clear for a while now so let's hope the streak continues!

Today was her pulmonologist's last time to see Olivia (moving to Alabama) so Olivia made sure to have the doctor check out her stuffed horse. The horse, Jesse, strained his leg doing a jump. Dr. Lowell said it's healing nicely and should be fine by tomorrow.

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.