Your story is so familiar. My son is 3 1/2 months younger than your beautiful daughter and has had an almost identical journey. Each day is a precious day with these little angels. Someday, all will be well. Let's help that day get here sooner with all we can do for the CF Foundation. Thank you for your blog:)
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.
2 comments:
I like this video. have a nice day
Your story is so familiar. My son is 3 1/2 months younger than your beautiful daughter and has had an almost identical journey. Each day is a precious day with these little angels. Someday, all will be well. Let's help that day get here sooner with all we can do for the CF Foundation. Thank you for your blog:)
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