We had not clue nothing was wrong with my daughter. We thought she was just little for her age and just pooped alot cause of the breast feeding. It was the beginning of the semester for me going into my EMT-Intermediate class. My wife and I had to drop something off at the post office. I went in and when I came out my wife was crying saying that there is something wrong with Jenessa. I looked at her in her car seat and thought she looks fine to me she was actually playing with her feet at the time(she was 2 months old). Then my wife said the words that changed our lives forever. "the Dr. called and said that Jenessa's PKU test came back and she has Cystic Fibrosis". Me having just a little bit of knowledge said well that is something with the kidneys right? I was thinking of Polycystic kidney disease. She said that we need to go to the hospital and talk to the Dr.<div>The Dr. was a the same clinic I worked for at the time so we went right up. We lived in the tiny town of Clovis, New Mexico at the time. The Dr. immediately put me on the phone with the genetic Dr. at UNM hospital named Joann. She then proceeded to tell me what all the disease was about the only question I could ask between all the tears was "whats the life expectancy". She told me that we needed to come to Albuquerque that night so we could go over some tests and have a sweat test done on her. </div><div>So since I was skipping the first day of college we figured why not lets drive to Albuquerque now. We had family up there so we just called them asked if we could crash for the night. The next day we had the sweat test where Jenessa would not sweat, and then followed by another the next day where she still would not sweat. They then decided to just do a genetic profile on her. </div><div>Let me tell you the 2 weeks it took for that to come back was the longest 2 weeks of my life. I came back for the Double Delta F508. over the next 2 years we moved to Albuquerque, had 12 hospital stays, 5 surgeries, and 1 at home picc line. </div><div>Now on to my next CFer but this story is short and sweet because he is only 5 months old. when my wife got pregnant it was the constant thought "what if this child has CF?" Her OB dr sent us to the high risk OB dr. It was there that we spent most of our appoitments. They tried to convince us to do the Amino we kept on pleasently declining. It is our belief that the womb is an environment on purpose, we didnt want to disturb it. So when my wife went into labor we let them know to take some blood and do a Genetic screen for Delta F508. well this one went alot quicker. We had to stay in the hospital for 3 days just because of the way my wife delivered. We were getting discharged when the Dr. came in and told us that Ethan was positive for CF. </div><div>That is our diagnosis story. If you have questions or comments feel free to post</div><div>Chris</div>
How my kids were diagnosed
- Thread starter CFdaddy
- Start date
We had not clue nothing was wrong with my daughter. We thought she was just little for her age and just pooped alot cause of the breast feeding. It was the beginning of the semester for me going into my EMT-Intermediate class. My wife and I had to drop something off at the post office. I went in and when I came out my wife was crying saying that there is something wrong with Jenessa. I looked at her in her car seat and thought she looks fine to me she was actually playing with her feet at the time(she was 2 months old). Then my wife said the words that changed our lives forever. "the Dr. called and said that Jenessa's PKU test came back and she has Cystic Fibrosis". Me having just a little bit of knowledge said well that is something with the kidneys right? I was thinking of Polycystic kidney disease. She said that we need to go to the hospital and talk to the Dr.The Dr. was a the same clinic I worked for at the time so we went right up. We lived in the tiny town of Clovis, New Mexico at the time. The Dr. immediately put me on the phone with the genetic Dr. at UNM hospital named Joann. She then proceeded to tell me what all the disease was about the only question I could ask between all the tears was "whats the life expectancy". She told me that we needed to come to Albuquerque that night so we could go over some tests and have a sweat test done on her.So since I was skipping the first day of college we figured why not lets drive to Albuquerque now. We had family up there so we just called them asked if we could crash for the night. The next day we had the sweat test where Jenessa would not sweat, and then followed by another the next day where she still would not sweat. They then decided to just do a genetic profile on her.Let me tell you the 2 weeks it took for that to come back was the longest 2 weeks of my life. I came back for the Double Delta F508. over the next 2 years we moved to Albuquerque, had 12 hospital stays, 5 surgeries, and 1 at home picc line.Now on to my next CFer but this story is short and sweet because he is only 5 months old. when my wife got pregnant it was the constant thought "what if this child has CF?" Her OB dr sent us to the high risk OB dr. It was there that we spent most of our appoitments. They tried to convince us to do the Amino we kept on pleasently declining. It is our belief that the womb is an environment on purpose, we didnt want to disturb it. So when my wife went into labor we let them know to take some blood and do a Genetic screen for Delta F508. well this one went alot quicker. We had to stay in the hospital for 3 days just because of the way my wife delivered. We were getting discharged when the Dr. came in and told us that Ethan was positive for CF.That is our diagnosis story. If you have questions or comments feel free to postChris
We had not clue nothing was wrong with my daughter. We thought she was just little for her age and just pooped alot cause of the breast feeding. It was the beginning of the semester for me going into my EMT-Intermediate class. My wife and I had to drop something off at the post office. I went in and when I came out my wife was crying saying that there is something wrong with Jenessa. I looked at her in her car seat and thought she looks fine to me she was actually playing with her feet at the time(she was 2 months old). Then my wife said the words that changed our lives forever. "the Dr. called and said that Jenessa's PKU test came back and she has Cystic Fibrosis". Me having just a little bit of knowledge said well that is something with the kidneys right? I was thinking of Polycystic kidney disease. She said that we need to go to the hospital and talk to the Dr.The Dr. was a the same clinic I worked for at the time so we went right up. We lived in the tiny town of Clovis, New Mexico at the time. The Dr. immediately put me on the phone with the genetic Dr. at UNM hospital named Joann. She then proceeded to tell me what all the disease was about the only question I could ask between all the tears was "whats the life expectancy". She told me that we needed to come to Albuquerque that night so we could go over some tests and have a sweat test done on her.So since I was skipping the first day of college we figured why not lets drive to Albuquerque now. We had family up there so we just called them asked if we could crash for the night. The next day we had the sweat test where Jenessa would not sweat, and then followed by another the next day where she still would not sweat. They then decided to just do a genetic profile on her.Let me tell you the 2 weeks it took for that to come back was the longest 2 weeks of my life. I came back for the Double Delta F508. over the next 2 years we moved to Albuquerque, had 12 hospital stays, 5 surgeries, and 1 at home picc line.Now on to my next CFer but this story is short and sweet because he is only 5 months old. when my wife got pregnant it was the constant thought "what if this child has CF?" Her OB dr sent us to the high risk OB dr. It was there that we spent most of our appoitments. They tried to convince us to do the Amino we kept on pleasently declining. It is our belief that the womb is an environment on purpose, we didnt want to disturb it. So when my wife went into labor we let them know to take some blood and do a Genetic screen for Delta F508. well this one went alot quicker. We had to stay in the hospital for 3 days just because of the way my wife delivered. We were getting discharged when the Dr. came in and told us that Ethan was positive for CF.That is our diagnosis story. If you have questions or comments feel free to postChris
C
Cherylwithone
Guest
Welcome to the group Chris. I have an 18 year old daughter with CF who just started her freshman year of college.
C
Cherylwithone
Guest
Welcome to the group Chris. I have an 18 year old daughter with CF who just started her freshman year of college.
C
Cherylwithone
Guest
Welcome to the group Chris. I have an 18 year old daughter with CF who just started her freshman year of college.
beautifulsoul
Super Moderator
WELCOME! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you find this site useful for you and your family. I saw that you were in the chat room earlier. Sorry, I was a little late to reply. We have Chat time every Wednesday night. Check back later tonight or next week and hopefully you'll meet several others. Everyone here is very supportive and encouraging. Thank you for taking the time to share your story with us.<div><br></div><div>~hugs to you~</div>
beautifulsoul
Super Moderator
WELCOME! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you find this site useful for you and your family. I saw that you were in the chat room earlier. Sorry, I was a little late to reply. We have Chat time every Wednesday night. Check back later tonight or next week and hopefully you'll meet several others. Everyone here is very supportive and encouraging. Thank you for taking the time to share your story with us.<br>~hugs to you~
beautifulsoul
Super Moderator
WELCOME! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you find this site useful for you and your family. I saw that you were in the chat room earlier. Sorry, I was a little late to reply. We have Chat time every Wednesday night. Check back later tonight or next week and hopefully you'll meet several others. Everyone here is very supportive and encouraging. Thank you for taking the time to share your story with us.<br>~hugs to you~