Tuesday, April 9, 2013

Playing on the swingset

I love being outside!!
Eewww, is that a bug? 
 Why are you not climbing with me??  What do you mean "You're tired?"
 Dirty feet are a sign that fun has been had

AUGH!!!  The grass has turned to lava!!
I feel a song coming.... 
 ...And IIIIIIIIIiiiiieeeeeiiiiiiii...
 ...Will always love....
Phew...nailed it.
 Its exhausting to be me.
 Its exhausting to be your dad. 

She's an animal!

Lately, whenever Olivia watches a cartoon such as Rio, Puss in Boots or Madagascar she wants to dress up like one of the characters.  Olivia was watching Kung Fu Panda 2 and wanted to be Tigress.  I had some time on my hands and attacked her face with eyeshadow, blush and eyeliner.  She was ecstatic, giggly and really got into the role.
 I think she's doing The Platypus Walk here...

I'm innocent! It wasn't me....it was the one-armed man!!

Our daughter is RAWRSOME!!!

Wednesday, January 9, 2013

January Clinic Results

Clinic is done FINALLY! We were there forever!
🔸She got her flu shot (which was traumatic), had her yearly labs drawn (which was triply traumatic) and her sputum sample (which respectively was no big deal).
🔸Her BMI was 43% (up from 38%-YAHOO!). She is 43 inches tall and 38.8 lbs.
🔸Her o2 saturation was down a bit at 97%, but that's still good so I'm not complaining. Plus she was chewing gum so she wasn't doing normal breaths.
🔸Her PFT's were very good (FEV1 117%).

We won't know the results from the labs and sputum culture until Friday or next week. They're working on getting us switched over to Cayston instead of TOBI.
Pretty good results so I'm a happy mommy.

Monday, January 7, 2013

The Story of Chris and Courtney

For the first Valentine's Day that we had Olivia, I decided to make Chris a slideshow/video that chronicled "us" up until that point (February of 2009).  I am incapable of watching it without crying, which in my book means I done good. 
The song is Stolen by Dashboard Confessional which is the song we had our first dance to at our wedding.

Wednesday, January 2, 2013

It's Great Strides time again!

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.
This year, there was a significant medication, Kalydeco, approved by the FDA for a specific gene mutation that 5% of CF'ers have. It has given those in the CF community hope for our children to have full and healthy lives. We now have a medication that looks like it treats the underlying cause of the disease. There are more medications in the pipeline that will help more in the CF community, people like Olivia. 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 Wannamaker Park on May 4, 2013. Please help me meet my fundraising goal of $3,000, 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.
To learn more about CF and the CF Foundation, visit www.cff.org.
Thank you for supporting Great Strides! Together, we can make a difference and “add tomorrows” to the lives of those with CF.
Courtney Neal is taking strides to make "CF" stand for "Cure Found!" Visit Courtney's Great Strides Home Page at http://www.cff.org/great_strides/OliviaNeal! NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Walker" page, enter Courtney's first and last name and click on "Find Walker." Then click "View Walker" in the results list to go to "Courtney Neal's Great Strides Home Page."