Just a couple days old
1 month old
2 months old
3 months old
4 months oldThis is something that I posted on another website about Tyler's diagnoses, I wrote this back in October, Tyler is now 4 months and 5 days old and somewhere b/w 11lbs and 11lbs 8oz. We will find out on Monday when we go back up to Duke for a checkup! Tyler is doing sooo well and is growing and changing so much everyday!! We were soo heartbroken when we found out that he had CF, I think I went into a state of mourning...but the more that we learned about CF and about all the research and treatments we started to feel alot better and more positive about our son's future. I love him soo much we wouldn't trade him for the world and we feel SOOO blessed to have him!!!
While I was pregnant with Tyler I got a test done to see if I was a carrier of Cystic Fibrosis, the only reason I did this was b/c it runs on my Husbands side of the family. Well my test came back negative so we didn't think we had anything to worry about. Well Tyler was born on 8/28/2009 weighing in at 5lbs 6oz 18in and just as handsome as can be! Well they do what is called a newborn screening on all babies when they are born to test for all kinds of diseases, well CF was added to the list just recently. Well two weeks went by and all was well until we went in for a weight check at his pedi. office. They then told us that his newborn screening came back positive for CF. They told us that one gene was found and that it more than likley meant that he was a carrier since I tested neg. Well it was routine to follow up with what is called a sweat test to test the sweat chloride levels and if it's high then it means they have CF. So we went up to Duke Children's Hospital to get that done and still we weren't too worried. We got the results later that day and it wasn't good news...the sweat test was positive! We were in total shock! They told us that I must have a very rare gene that didn't pick up on my test. So they took some blood from Tyler and sent it off to do a full genetic testing to find the other gene and to conform that he has CF. Well this took FOREVER to get back...alittle over a month! Until then we had to continue going up to Duke for checkups and weigh ins, chest xray and other tests. He did great on all of them. Chest xray came back CLEAR..yay! He was put on enzymes to help him digest his formula so that he could gain weight and was put on a different formula to also help with that. They want him to gain 1oz a day and so far so good! He now weight 7lbs4oz and is doing soo great! He's a strong little guy! Well we just got the genetics test back and they did find the other CF gene and was clinicaly diagnosed with CF. The two CF genes that he has is mainly in the pancreas and mild to moderate in the lungs. Sooo hopefully he will have and exremely mild case!!! We have been praying everyday and God has been blessing us!! They are very impressed with how healthy he is and we intend to keep him that way with whatever we can do! We currently do chest PT's to help keep his lungs clear. We hope to get him on a clinical trial doing hypertonic saline, they are having so much positive feedback from that med. and whatever we can do to help Tyler and to help others with CF that's what we will do!! With so much that is out there...treatments and research on CF I feel good about my sons future and everyone else's! I will continue to have updated on Tyler and how he is doing so feel free to leave me comments or ask any questions!
While I was pregnant with Tyler I got a test done to see if I was a carrier of Cystic Fibrosis, the only reason I did this was b/c it runs on my Husbands side of the family. Well my test came back negative so we didn't think we had anything to worry about. Well Tyler was born on 8/28/2009 weighing in at 5lbs 6oz 18in and just as handsome as can be! Well they do what is called a newborn screening on all babies when they are born to test for all kinds of diseases, well CF was added to the list just recently. Well two weeks went by and all was well until we went in for a weight check at his pedi. office. They then told us that his newborn screening came back positive for CF. They told us that one gene was found and that it more than likley meant that he was a carrier since I tested neg. Well it was routine to follow up with what is called a sweat test to test the sweat chloride levels and if it's high then it means they have CF. So we went up to Duke Children's Hospital to get that done and still we weren't too worried. We got the results later that day and it wasn't good news...the sweat test was positive! We were in total shock! They told us that I must have a very rare gene that didn't pick up on my test. So they took some blood from Tyler and sent it off to do a full genetic testing to find the other gene and to conform that he has CF. Well this took FOREVER to get back...alittle over a month! Until then we had to continue going up to Duke for checkups and weigh ins, chest xray and other tests. He did great on all of them. Chest xray came back CLEAR..yay! He was put on enzymes to help him digest his formula so that he could gain weight and was put on a different formula to also help with that. They want him to gain 1oz a day and so far so good! He now weight 7lbs4oz and is doing soo great! He's a strong little guy! Well we just got the genetics test back and they did find the other CF gene and was clinicaly diagnosed with CF. The two CF genes that he has is mainly in the pancreas and mild to moderate in the lungs. Sooo hopefully he will have and exremely mild case!!! We have been praying everyday and God has been blessing us!! They are very impressed with how healthy he is and we intend to keep him that way with whatever we can do! We currently do chest PT's to help keep his lungs clear. We hope to get him on a clinical trial doing hypertonic saline, they are having so much positive feedback from that med. and whatever we can do to help Tyler and to help others with CF that's what we will do!! With so much that is out there...treatments and research on CF I feel good about my sons future and everyone else's! I will continue to have updated on Tyler and how he is doing so feel free to leave me comments or ask any questions!
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