My name is Kara, and my 10 week old son has CF. He was diagnosed at a month old. I never knew it ran in my family, because no one else has ever had it. I have another son who is 3 and a half and is a healthy little boy. He does have some lung cysts that he was diagnosed with when he was about 6-8 months old. Hes had several lung scans to watch them to see if they grow in size or if they will diminish completely on their own. Hes never really had any trouble with them, but he does have asthma and so do I. When my second son was born, they had told me my entire pregnancy he was under 5lbs because I didnt gain much weight and on all the sonos he looked small. He was actually an 8lb 5oz big boy! He was a c-section baby, and the doctors told me he was pretty fluid overloaded. 2 hours after birth he was sent to the NICU for irregular breathing and he couldnt keep his temperature up. He squeaks when he breaths, and still to this day does. His breathing is mainly what scares any/everybody because of his rapid breathing, spells of not breathing, and the squeaky noise he makes. He spent the first week of his life in the NICU. When we went for our 2 week checkup, our pediatrician sent us a referral to a pulmonologist for a second opinion on his breathing. We went when he was about a month old and stayed for one night. He saw a few other specialists, since he has a few more problems as well. We saw a geneticist who drew multiple tubes of blood from both me and my son. The tests came back and said that DS did indeed have CF. His genes are DF508 and G551D. We have had a few issues so far since his diagnosis but nothing to terrible. He has had lots of tummy and GI issues, but I think we have finally gotten that nipped in the butt. He is a breastfed baby, but was put on formula also to help gain weight. Hes just now passed his birth weight as of Thursday thank goodness. Im hoping since we switched to a new formula that doesnt make his tummy hurt/constipated that maybe he will start to gain weight. I dont really know much of what to expect from CF nor how hard its going to be later on down the road. Im a young single mom but I have a great support system to help me with my kids. Im also pretty new to this board and looking forward to learning more about CF and how it affects other people. Im going to school to become a nurse, and later on a doctor so this will be very helpful to me. I know this is long and if you read this all Im impressed, LOL. Thank you for your time and I hope I can learn alot!
Posted on: Mon, 07 Jul 2014 05:00:01 +0000
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