Hi. My first born was born with meconium illeus. This led to the diagnosis of CF. He is 2 1/2 years now and is doing great. It was scary and we did not know what to expect. What was his life going to be like? What would he endure? How sick would he be? What will be different? All these feelings and fears were just thrust into our lives. Well, I am glad to say that he did not need surgery. They gave him many enemas and the last one worked. We brought him home 7 days after he was born and it has been a journey. The clinic that he go to is fantastic and very aggressive. They had us come in about 2 weeks after he was born and sat us down. They went over all the aspects of CF and what it was going to be like to take care of a child with CF. He takes his Ultrase and his Adek vitamins and we do his Chest Physical Therapy every morning. When he gets a cold (3 to date) - we double up on the Chest Therapy and watch to see if it goes into his chest. It has not yet. (knock on wood) The Ultrase helps him absorb fat and protein and he takes two capsules before each meal. When he was first born, he only had to take a 1/2 of a capsule and we broke it open and mixed it with applesauce. Since I nursed (which is best for babies with CF) I would give him the spoonful of a mixture of applesauce, salt and Ultrase and then put him to the breast right away. This way he would swallow down with no problem. He has been responding to the Ultrase very well and has gained weight wonderfully. That is one of the keys to keeping them healthy. Keeping the weight on so they grow as normal as possible. He goes to the clinic every 8 weeks since he has been born and loves everyone there. They are like his second family. They do a great job and there is so much more research that is out there and developments in the works to make the disorder be controlled, at the least. Give years on people's lives with CF. I joined the Parents' Advisory Board at my son's clinic and I am involved with my son's disorder as much I could be. It is scary but as time goes by, you just deal with it day by day. Remember, even though your child has CF, it does not mean that CF defines who they are. There will be some bad days, but you get through them by being there for your child and supporting them as much as you can. Good luck and I hope that this helped.
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Pregnant with questions
- Thread starter maccole4
- Start date
Hi. My first born was born with meconium illeus. This led to the diagnosis of CF. He is 2 1/2 years now and is doing great. It was scary and we did not know what to expect. What was his life going to be like? What would he endure? How sick would he be? What will be different? All these feelings and fears were just thrust into our lives. Well, I am glad to say that he did not need surgery. They gave him many enemas and the last one worked. We brought him home 7 days after he was born and it has been a journey. The clinic that he go to is fantastic and very aggressive. They had us come in about 2 weeks after he was born and sat us down. They went over all the aspects of CF and what it was going to be like to take care of a child with CF. He takes his Ultrase and his Adek vitamins and we do his Chest Physical Therapy every morning. When he gets a cold (3 to date) - we double up on the Chest Therapy and watch to see if it goes into his chest. It has not yet. (knock on wood) The Ultrase helps him absorb fat and protein and he takes two capsules before each meal. When he was first born, he only had to take a 1/2 of a capsule and we broke it open and mixed it with applesauce. Since I nursed (which is best for babies with CF) I would give him the spoonful of a mixture of applesauce, salt and Ultrase and then put him to the breast right away. This way he would swallow down with no problem. He has been responding to the Ultrase very well and has gained weight wonderfully. That is one of the keys to keeping them healthy. Keeping the weight on so they grow as normal as possible. He goes to the clinic every 8 weeks since he has been born and loves everyone there. They are like his second family. They do a great job and there is so much more research that is out there and developments in the works to make the disorder be controlled, at the least. Give years on people's lives with CF. I joined the Parents' Advisory Board at my son's clinic and I am involved with my son's disorder as much I could be. It is scary but as time goes by, you just deal with it day by day. Remember, even though your child has CF, it does not mean that CF defines who they are. There will be some bad days, but you get through them by being there for your child and supporting them as much as you can. Good luck and I hope that this helped.