Friday night, Jenn and I went to Atlanta to eat (without kids and husbands) and spent the night at Grandmomma's house (Jenn's Grandmother-in-law). Grandmomma lives on the same road as the Cystic Fibrosis Center at Egleston! We had a great time eating at Chili's without someone throwing a fit, someone needing more juice, someone tying to get out of the highchair, and someone having to go to the bathroom! It was nice to have an adult conversation and actually enjoy a meal! Staying at Grandmomma's was also great because we left her house at 7:50 am for the CF Family Day, which began at 8:00 am! This was way better than driving an hour from Gainesville and hoping we got their on time. Thank you for letting us stay at you house Grandmomma!
When we finally found our way to the CF Family Day activities, there was a wonderful spread of breakfast foods. While we ate we walked around to all of the CF related vendors. There were so many vendors with things I had never seen before. Jenn and I had a great time walking around to each vendor. We learned and saw a lot of cool things...we also picked up a lot of FREE goodies! If anyone uses Ultrase, the rep informed me that there will be some new and exciting things the company will be starting soon...but she couldn't tell me about it yet! She said the people using Ultrase, Scandi Shakes, etc. will receive something in the mail around February 16th! I can't wait to find out what is new!
The CF Family Day also included several speakers sharing information about current CF research, nutrition, phase 3 drugs, and the importance of airway clearance. I learned soooo much! To answer Reilly's mom, Cindy's question she once asked, Do CF carriers have symptoms?, YES! The doctors said that many carriers of CF may also have sinus issues, asthma, frequent upper respiratory infections, digestive issues, anemia, vitamin D deficiencies, and more!! Hearing this bit of information gave me some understanding behind many of my personal health issues. I am constantly battling a sinus infection, I have had sinus surgery, each winter/spring I get chronic bronchitis, I have always had digestive issues, I am anemic and vitamin D deficient! Wow....one could think I had a mild case of CF...but my blood work says I am just a carrier of Delta F508!
I learned that 90% of people with CF or people who are carriers of CF, have the gene mutation DF508. Researchers are working on ways to correct the DF508 mutation. It is believed that if at least one of the mutations causing CF can be corrected, then it would be as if the person who once had CF was now just a carrier! Since carriers are typically healthy people, the hope is that would also be the case for those with the repaired mutation. The data and research findings were incredible. A CURE is within reaching distance....I am sure! It was noted that they are having difficulty funding the much needed research due to the economy, so it is up to the people who are affected by CF to spread awareness. It is vital to Lainey's life as well as others affected by CF for the CF Foundation to continue receiving funding for their research. Please donate if you can...you will be saving lives sooner rather than later! Here is the link to Lainey's donation page ~ http://www.cff.org/GiftReg/DeAnnSmithson
There was so much more I learned, but I could never post all of it...not because I can't remember or don't have the energy to talk about it...but because I don't have the time to type it all! Talking is my favorite thing to do....as if most people didn't already know that....so ask me some questions the next time you see me!
Please continue to pray for our family! I think we are all over the stomach virus, but we all still have stuffy and runny noses! We are hoping that Lainey's runny nose goes away or at least continues to stay clear! This week brings many things...inquiring about putting our house on the market, Logan's 5th birthday, doctor appointments, a WIC appointment, Valentine parties, Synagis shots, and I am sure there will be more! Good health and sanity continues to be in my hourly prayers!
Have a blessed week,
PS ~ Lainey is sitting up on her own now!! YEA Lainey! She loves seeing everything from her new view!