Lainey's 2nd CF appointment

Hello. Yesterday Lainey (8 weeks old) had several doctor appointments and I am happy to report that she is doing awesome! Our first appointment was with the surgeon. After looking a her incision (from surgery when she was 5 days old) and the site where the t-tube entered her colon, Lainey was given a thumbs up! No more visiting the surgeon unless she were to need future surgeries! Our second appointment was with her team at the Cystic Fibrosis Center. Her team consists of a nurse, respiratory therapist, social worker, dietitian, and doctor. Lainey weighed in at 9 lbs. 6.7 oz! This was a gain of almost one and one half pounds in 3 weeks!! She also grew another 2 inches to make her 23 inches long! Her weight has been a huge concern of ours, thus putting most of our effort into fattening her up! The more weight she gains her first three years of life, determines how well she will do as she progresses in her disease. The team would still like to see her gain 3 pounds per month, but they were satisfied with what she gave them this time! To assist in gaining weight, her enzyme intake has increased to one and one half capsule per feeding. Since the capsules assist in food absorption, they are hoping this will help her to gain even more weight. Anemia is also a concern with Cystic Fibrosis. Since she has been whiter than me (that is hard to believe) indicating low iron levels, her iron intake has also increased. Aside from learning how to perform chest physical therapy for preventative measures, her lungs sounded great! For now, and hopefully forever, her Cystic Fibrosis is only effecting her digestive system. Although she will be on enzymes for the rest of her life, we are hoping to prevent any and all respiratory infections that might reduce her lung function. With the new school year quickly approaching, please pray for my parents as they will be caring for Lainey. Since even the smallest cold could send Lainey to the hospital for a couple of weeks, the doctor strongly suggests keeping her out of daycare for at least one year! Taking care of Lainey will be a big job for my mother since she is in poor health. It will also keep my parents from traveling; something they have enjoyed since dad retired last August. We are fortunate to have them care for Lainey. She is guaranteed to be spoiled rotten at the end of each day! Thank you to everyone for your thoughts, prayers, words of encouragement, and gifts. To learn more about Cystic Fibrosis and how to help find a cure, check out the Cystic Fibrosis Foundation web site at www.cff.org .
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey

Vacation

Hello! It has been a while since I have updated everyone on Lainey and her progress. We had a wonderful vacation at Flagler Beach just north of Daytona. The five of us spent 9 days in our camper just yards from the beach. We are so lucky to have an awesome family with whom we spent our vacation. My parents, grandparents, three uncles and their families, my sister and brother-in-law, and his family were all together for vacation. The boys absolutely had a blast on the beach! Before we arrived, they had already been at the beach for a week with my parents. Tough on my parents, nice for Sid, Lainey, and I getting to know each other. It was a much needed break from the hospital, doctors visits, and stress of the past month! We came back last Saturday, but our 8 hour trip turned into a two day 12 hour trip! Traveling with 3 kids under four years old, 2 in diapers, 1 that likes to check out every bathroom, and all three that like to eat ~ it was interesting to say the least! Sid began nursing school this week and boy what a transition for all of us! He is in school 4 days a week, then works 12 hour shifts in ICU at NGMC the other 3 days in the week! Our time with him is limited, therefore we cherish every minute...and will until he is finished with school in 2 years!
Lainey gained half a pound while we were on vacation (this is what happens when you hang out with my mom...she likes to feed anyone that will eat!) The doctor has decided that she gains weight better when she is taking only formula, therefore the breast feeding has ceased. I wasn't opposed to that, but the formula is $26 a can and the can lasts for 4 days!! YIKES! We are fortunate to have a very knowledgeable case manager at the Cystic Fibrosis Center. She has helped us to apply for several grants, waivers, and government assistance programs in ways that income is not the deciding factor in obtaining assistance, but is based on the disability and it's longevity. Since Cystic Fibrosis is a lifelong disease that requires many hospitalizations, medications, breathing treatments, possible organ transplants, and leads to premature death (median age of survival is 37 years old), we are confident that we will qualify for much needed assistance in paying hospital bills, doctor bills, co-pays, deductibles, and medications.
Next week will bring new information with the two doctor visits we have scheduled. We are first meeting with her surgeon for a checkup, then we will go to the Cystic Fibrosis Center for her monthly checkup and physical. We are praying that she will be at least 9 lbs. when we go for her visit on Wednesday. The doctors want her to gain 3 lbs. per month, but we will be happy if this month brings us at least 1 pound! We will let you know what the doctors think of her progress after her visit next week. It is amazing how healthy she looks, yet knowing what she is dealing with physically is heart breaking. Please continue to pray for her good health and strength for our family. Thank you for all of the wonderful meals, cards, gifts, and comforting words. We are eternally grateful.
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson