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bmstee03
member
Cystic Fibrosis Update
bmstee03
member
I posted asking about other bumpies with children diagnosed with CF right after my lo failed his sweat test.
Update: He is doing great! They identified the genes that he has and he appears to be on the very mild end of the symptoms he could have. He will continue to go to the Pediatric CF center for monitoring and anything else that may arise. The only major problem they forsee him having in the future is infertility. He will get sick a little more than other children so we need to be careful about germs, but if this is the biggest thing we have to worry about we are very blessed. It could have been so much worse and we are so thankful that we have a relatively healthy child who is growing leaps and bounds! The Dr's even said that without the newborn screen and further testing he may never have even been diagnosed because his symptoms are so mild.
That being said dh and I will not be having any more children. We have a 25% chance of having another child with cf and we may not be so lucky the next time.
Our friends and family have been raising money for the Great Strides Cystic Fibrosis walk since CJ's diagnosis and we are hoping to reach $1500. We are close to our goal and have several events coming up. It feels good to do something to help find a cure for this disease.
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Re: Cystic Fibrosis Update
I am so gald to hear that he is doing well. Please stay in touch and we can share stories. JJ is a thriving 9 month old with CF and is doing well.
We are also walking in the Great Strides next month. GL!
I'm glad to find another mom to talk to. It's funny that you have a JJ and I have a CJ. lol
Hi - I'm so happy to hear that your DS is doing so well!!
I am a little late but that is great news! We went through the same thing with my ds and he also has very mild CF. He is 2 1/2 and doing great - no problems related to the CF. Good luck to you and your lo!