This blog is to keep our friends, co-workers, and family up to date on our family and Lainey's Cystic Fibrosis.
Sunday, November 30, 2008
Blessings
Who was that overweight man by the Christmas tree?
Now that I am finished stuffing my face with Thanksgiving yummies, I am finally free to update everyone on our most thankful Thanksgiving. Although dad and grandma Lil were sick with the stomach bug (Logan and I began spreading it several weeks ago) and it was cold and rainy, we had a wonderful time camping at Stone Mountain! We arrived and set up our campsite just in time for dinner Tuesday evening. After eating a wonderful meal made by grandma Lil, we were actually able to go to bed by 10:30!! The next morning came quickly along with the news that both dad and grandma Lil were up all night with the stomach bug! With that, our camper became "hang-out" away from sick people!
On Thursday everyone was feeling well enough to eat a full Thanksgiving feast. Dayna, Brad, and Lilly Anne joined Sid, Logan, Liam, Lainey, mom, dad, grandma Lil, grandpa Bob, Uncle Donn, Aunt Jenny, Emily, Erin, Evan, Elizabeth, and I for Thanksgiving dinner. We were like the original Indians and pilgrims ~ eating outside at a long wooden table with a feast of food fixed using numerous methods of preparation! Note * campers have ovens and stoves, but not big or durable enough to handle a Thanksgiving feast. Luckily our campsites were equipped with big grills ~ ideal for our cooking minus the fact we had to do the cooking outside!
After a day full of compiling lists of items I wanted to purchase, I was up and shopping by 7:00 on Friday! Fortunately not many people that live close to Stone Mountain park were interested in shopping! I was able to get everything I wanted and did not even have to wait in line at the register....and I was at Wal-Mart and Target! I saved a lot of money and almost completed my Christmas shopping within a few hours....now for my least favorite thing ~ wrapping!
We were thrilled to have Sid's grandparents, Dick and Juanita, come to visit us in Stone Mountain. On their way to Florida for the winter from their home in Michigan, Dick and Juanita came to see our family and to meet Lainey for the first time! It is always great to see them although it is not as often as we would like! :(
It began raining mid afternoon on Friday and continued through our packing, our trip home, and the remainder of the day on Saturday. We had a wonderful time with our family and camping at Stone Mountain, but it is always great to be back home.
The Smithson Elves
After much convincing from the kids and I, Sid got the decorations out of the attic and began putting up the tree on Saturday evening! I am not sure who is more excited about Christmas this year, Sid and I or the kids! Logan and Liam are really into making Christmas lists this year. Their understanding of Santa and the true meaning of Christmas with the birth of Jesus is more apparent than ever. The innocence of a child at Christmas is priceless.
Buggy Claus!
I have added the video below as a reminder of the things our family is thankful for. This year has been full of emotions ~ happiness, sadness, anger, helplessness, jealousy, fear, awe, wonder, numbness, loneliness, amazement, hopefulness, and so many more emotions that continue to be with our family daily. The support of our family, friends, and people we don't even know, has been the greatest of all blessings. We are eternally thankful for everyone who has and continues to keep our family in their thoughts and prayers. It is our mission to share our story with as many people as possible in order to spread awareness of Cystic Fibrosis. We hope that Lainey will be able to tell her children and grandchildren that she had CF, but with the help of others CF now stands for Cure Found. Please consider making a donation to the Cystic Fibrosis Foundation ~ 90 cents of each dollar donated is used directly for research purposes. Donations in Lainey's honor can be made at: http://www.cff.org/GiftReg/DeAnnSmithson
** Before watching the video, scroll to the bottom of the web page to pause the music. The pause button is on the top left of the music playlist.**
Donations can be made in honor of Lainey to the Cystic Fibrosis Foundation (http://www.cff.org/). Any and All donations to the Cystic Fibrosis Foundation help the foundation to be one step closer to finding a cure for CF, ultimately saving our baby girl's life from this life long illness. Thank you for your donations!
Click below to view and donate through Lainey's Great Strides page. You can also join our team from Lainey's page!
Sid and I married June 8, 2002. We decided to start a family and had our first son, Logan, in February of 2004. Shortly after in April 2006, our second son Liam was born. Wanting a girl, we knew we would have another child. We got pregnant sooner than we wanted, but were thrilled to learn we were having a girl! Lainey was born in May 2008. Our family was perfect with 3 healthy children ~ or so we thought. Lainey did not have a bowel movement within the first 48 hours of life. Through x-rays the doctors found what they thought to be a blocked colon. She was taken to the NICU and transported to Egleston a few days later. She had surgery at 5 days old. Her bowels were blocked and it was suspected she had Cystic Fibrosis. After several weeks we learned that in fact Lainey does have Cystic Fibrosis. Through this disease, we have learned and grown a lot as parents. We are ready to share everything we learn to help inform others about Cystic Fibrosis. To learn more, visit www.cff.org.
Weight 28 lbs. 9 oz. Length 35 inches Digestive Nexium 15 mg capsule ~ 2 daily
Fer-In-Sol (iron) ~ .3 ml - 2 times daily
Aquadeks Vitamins ~ 1 ml - 2 times daily
Zenpep ~ 2 before each snack/meal Septra ~ 1 tsp - 2 times daily Cyproheptadine ~ 2.5 ml - 2 to 3 times daily Respiratory Albuterol ~ 2 times or more per day as needed
Saline 7% ~ 2 times daily
Pulmozyme ~ 1 time daily
Vest Therapy ~ 30 minutes 4 times daily
CPT (Chest Physiotherapy Treatment) ~ 30 minutes 2 times daily as needed
Weight Gainers Vital Jr. 24 oz. per day
Boost 10 oz. per day
1/4 tsp. of Salt in foods/drinks
Lainey's Gene Mutations
Delta F508 R560T
Cystic Fibrosis can do many things to us, but it can't take away our will to live, the love we give and receive, the faith we hold in our hearts, and most importantly our inner strength.
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