Celebrity Waiters...

Celebrity Waiters...

Yesterday, we were lucky enough to be invited to attend the Celebrity Waiters Charity event benefiting the Cystic Fibrosis Foundation. There were a lot of VERY generous people who donated money to find a cure.

I was glad to get to spend the day with other CF families. It was nice to get to spend time with my friend, Sarah Kaupp, who also has a 3 year old daughter (Sarhea) who was born with CF. Sarah is an amazing person and I am so glad to know her! We met because of our girls, and the sad thing is, they can't ever be around each other. My hope is that they will find a cure and save all of these precious lives and Hailey and Sarhea will finally be able to have play dates together!

I was also able to finally meet Justin and Andi Reno. I first heard about the Reno's on the news, when they lost their beautiful daughter, Anna, to this horrible disease. My heart broke for them when I finally was able to make myself watch the video that was aired on Channel 19, and my heart still breaks for them now. I can't even begin to imagine what they have and are still going through every single day. While talking with them yesterday, even for a brief time, I could see how strong they were. They shared some tips and advice on Hailey's g-tube (if she ends up with one) and they also shared some memories about Anna. They have to be without a doubt, some of the strongest people I have ever had the pleasure of meeting.

I also met  Wes Needham. Who is 25 and living with CF. He is an inspiration and gives me so much hope for Hailey's future! He is very successful and didn't let CF stop him from making his dreams a reality. He graduated from UC with 2 degrees and now works for Duke Energy as an Electrical Engineer. Very glad to have met him and his parents!

Thank you so much to EVERYONE who came, donated, and volunteered to make the event possible!!!!

www.sarheasunshine.com
www.annas-army.com

Coughing....

Hailey's last bronchoscopy was on November 2....her lungs were clear!! YAY!! But since then, she has developed a very wet sounding cough. I'm trying not to get too paranoid. Her first bronch was on August 31st and her lungs were so bad that we were admitted right away. We stayed in the hospital for 2 weeks while she was getting IV antibiotics through her picc line. I just do not want another hospital stay!!! She is narrowly avoiding a g-tube right now. I'm hoping that her weight keeps going up and that she will not have to have one at all!
Some days, I feel like we are doing ok. Other days, I don't even know how to start the day. I feel so stressed out about everything! I hate this disease and what it is doing to my baby girl and our family.  I try to stay positive, but sometimes it's hard to do. Knowing what we're up against with this disease is tearing me apart inside.