A Buggy Kind of Day

Lainey and I enjoyed playing today while the boys were taking a nap! We needed some girl time since I went to the CF Family Day at Emory in Atlanta Friday night and got home Saturday evening. Sid had to work all weekend and the CF Family Day began at 8:00 am on Saturday, therefore I had to find places for the kids to hang out! Lainey went with Gigi and Papa to Warner Robins, Georgia on Friday and came back Saturday night. Lainey got to go see her Great Grandpa Bob, Great Grandma Lil, Great Pop, and Great Grandma Dorothy while she was visiting in Warner Robins. Liam and Logan went to hang at their Papa Dan's house Friday night until I picked them up on Saturday evening. Liam and Logan got to visit with their Great Grandma Barbara. Although I was told that each kid was very well behaved, each grandparent looked worn out!





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,
DeAnn

PS ~ Lainey is sitting up on her own now!! YEA Lainey! She loves seeing everything from her new view!

Enzymes

Here is the newest update on Lainey. Today Lainey is 3 weeks and 1 day old. She is up to 7 lbs. 12 oz. (she weighed 7 lbs. 3 oz. at birth, and 6 lbs. 12 oz. when we arrived at Egleston). Today the doctors took out the PICC line in her arm, ending her lipids (fats) IV and clear fluids. They also quit the irrigation into her bowels and clamped off the t-tube. They haven't removed the t-tube in case she has any more issues going to the bathroom in the next couple of days. She is up to eating a little over 2 oz. of breast milk with powdered formula added to increase her calorie count. People with Cystic Fibrosis usually have great difficulty gaining weight, therefore the doctors want to add as many calories as possible to her diet. In speaking with the Cystic Fibrosis doctor, we have learned a lot about what the future will and may bring for Lainey and our family. She will have an appointment each month with the Cystic Fibrosis Center. Her doctor is very curious and eager to learn more about her stands of Cystic Fibrosis. People with CF are born with the delta F508 strand and another mutation of the 7th chromosome. Approximately 66% of people born with CF have 2 strands of delta F508. This is one of the worst cases of CF, causing digestive and respiratory problems and eventually causing death from numerous infections in the lungs. For the other 34% of people with Cystic Fibrosis, they have delta F508 and one of the other 1500 + mutations of the 7th chromosome. Lainey has delta F508 and R560T. Her doctor at the CF center looked through the Georgia data base on known CF patients and she is the only patient that has the combination of delta F508 and R560T!! She is also gaining weight...another plus for people with CF, whom usually suffer from "failure to thrive". She is definitely testing the doctor's knowledge and curiosity, as she is unlike any case he has ever had! She also hasn't had any respiratory problems! After performing several tests on her stool, the doctor found from one test that she has too many fats in her stool. These fats are usually absorbed by the body in people that do not have CF. Since she has too many fats, the doctor has decided to put her on enzymes. Starting yesterday and for the rest of her life, Lainey will need to take enzymes before each meal or snack in order to properly digest her food. This has been difficult since newborns can't swallow capsules! Before each feeding I have to break open the enzyme capsule, put the enzyme beads in applesauce, and finger feed the applesauce and enzymes to her!! This takes forever, but I am sure she will catch on soon! Originally we thought she might go home this Friday, but the doctors are saying that it may be Monday or Tuesday of next week. We are just ready to bring our "Lainey Bug" home!! Hopefully she will soon get to meet all of the people who have been helping to bring her home through all of their words of encouragement, thoughts, prayers, and support. We also appreciate all of the people that have called and taken care of my parents (Dwight and Diane Schwartz) with meals and in helping with our boys! Thank you all!
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson