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Hello....it's been a long while since I posted, but I don't know what to do for my daughter. Everything has been going along fine. My grandson is almost 5 and has been hospitalized 3 times. My daughter missed some consecutive appointments and the social worker in that office called CPS....my...

Aboveallislove, Yes, it's been awhile since I've posted.....life has just been so fast. Jaiden...the first grandson....has done really well. He went two years with no issues whatsoever and then this past summer, he had to be hospitalized for staff infection in lungs. Thanks for your kind...

Hello everyone, Thanks for the advice and words of wisdom. I have five children and my daughter has two and we all live under one roof....so nine in all our family. We've been real busy. Well, we took him back to dr at 5 days old and he had gone from 6lbs 12 oz to 7lbs.......he weighed 7 lbs 2...

We can't remember with the first child because we were not looking for it....found out when he was a month old after 2nd newborn screening. Yes, we have newborn screening, but of course we are wanting to know sooner....just wondering about newborn signs....of course the weight gain, but we won't...

Good Morning, I have a few questions. My grandson has CF and he is 2 1/2. My daughter just had baby #2 and we have already started to worry and speculate about whether he will have CF also? What should we look for at this stage? He is 4 days old. I know weight, but we have no way to weigh right...

Hello everyone, Update on baby Jaiden....in two weeks, he went from 7 lbs 7 oz to a whopping 9 lbs.....wow, we are so blessed. Those enzymes are a miracle from God.....I can't believe how filled out he has become.....and he is starting to cooh....so sweet. He got another sweat test and blood...

Hello again, Thanks for all the experience that is here....so helpful. Everyone makes such excellent points about dealing with this illness. I'm anxious to go to the next appointment to see if he as gained weight. We are using the little plunger to do the tapping on his lungs.....it is very...

Wow, Lisa....that is so amazing....I can't believe that....now if you would have just had another baby at 43....our stories would be exact....LOL<img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" /> Your post...

Hello, Thanks for all the information.....we are very hopeful for success with these drugs. We are just so unsure how to handle something that would happen. I do havea few questions, but first let me address your questions about breathing treatments. They told us to do the percussions once a day...

Thanks so much....yes, he did begin coughing last night......so glad you mentioned that. My daughter got up this morning asking about his coughing. They did mention putting in his formula a little in each bottle...instead of one whole packet in one bottle. Maybe we will try that. I also wanted...

I'm sorry...yes 508....they said it is the one most common. Well, our appointment started at 10:30 and we didn't get home till 4:00.......it was exhausting and emotionally draining. The doctor made one mention of some infants dieing and my daughter lost it....that's all she focused on. The...

He has deltaf504 for both mutations

Wow, Thanks so much for all of these wonderful stories. My dauther and I have both been so uplifted. We are researching all we can and I am taking her along with me. We had a talk tonight about being proactive when making others use hand sanitizer and making sure others are not sick, etc. I...

How do they determine whether there is protein at the cell base? Is all that done through blood testing?

I was just reading the posts to my daughter and she started to cry....stating, "I don't like that word hopeful." I asked her, "would you rather unhopeful?" She said, "I don't want to hope; I just want to know he is ok." I'm trying to cope myself and teach her to cope as well.....it's hard...

aboveallislove Thanks for you informative post....very helpful and we plan to print and take with us to doctor. I'm not sure of gene....only that the nurse said the test showed two. We are supposed to go pick up the actual test report tomorrow. We are in Fort Worth, Texas....there is a care...

Thanks Patpat, I needed to hear those words. I'm going to be very proactive, but my daughter needed to hear some hopeful words....I read her your post. All the gentic talk on here is very confusing...but I will just try to take it a day at a time. The thing I most worry about with him....is he...

Hello, I'm so glad I found this site as my daughter and myself are so worried over my 4 week old grandson. My daughter is 16 and I am 43....we both were pregnant and delivered our babies on the same day.....May 8th. We have already been through so much with my daughter getting pregnant at a...