grannylana
New member
Well it has been months since I have been here do largely in part to my busy life but also to the fact that we were told Ely did NOT have CF and we continued to look for answers.
Well after being told Celiac Disease ( wheat gluten) and getting our hopes up we still had no answers and she continued to get sicker. Like most she did fair through the summer. After being transferred to several different specialists today we were once again given the diagnosis of CF.
With 2 positive sweat tests I think we knew it all the time but when the University did the nasal suspension and said " No Way" we hoped.
I had heard from some of you that they may never find her mutation and that is why they had begun to question her previous diagnosis. Today this new specialist said maybe we can just pray it is a very mild form and that is why it has been so hard to pinpoint.
She is doing very well right now, better than mommy and daddy actually.
They panicked and moved across the state to be closer to the preferred CF clinic that they liked. Now with their 2 year old home unsold after 6 months they are questioning their decision.
Just wanted to update those who were so good to support me and my family last year and tell you - WE'RE BACK.
Grannylana
Grandma of 7 - 1 with CF
Well after being told Celiac Disease ( wheat gluten) and getting our hopes up we still had no answers and she continued to get sicker. Like most she did fair through the summer. After being transferred to several different specialists today we were once again given the diagnosis of CF.
With 2 positive sweat tests I think we knew it all the time but when the University did the nasal suspension and said " No Way" we hoped.
I had heard from some of you that they may never find her mutation and that is why they had begun to question her previous diagnosis. Today this new specialist said maybe we can just pray it is a very mild form and that is why it has been so hard to pinpoint.
She is doing very well right now, better than mommy and daddy actually.
They panicked and moved across the state to be closer to the preferred CF clinic that they liked. Now with their 2 year old home unsold after 6 months they are questioning their decision.
Just wanted to update those who were so good to support me and my family last year and tell you - WE'RE BACK.
Grannylana
Grandma of 7 - 1 with CF