Update on granddaughter Ely

[grannylana]

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

 

[grannylana]

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

 

[grannylana]

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

 

[grannylana]

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

 

[grannylana]

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

 

[ktsmom]

Welcome back - I wish it were under different circumstances.

I don't have any experience with the Class III and IV mutations but I know others do and they'll jump on with great information and insight.

I'm sure mommy and daddy are questioning anything and everything at this point. You guys have been on a crazy ride with the different diagnosis opinions. Mild or not, it is so much better to have the diagnosis and treat it agressively now. There is every reason to believe that your beautiful granddaughter will grow and thrive and live to be a granny herself.

Best wishes to all of you <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome back - I wish it were under different circumstances.

I don't have any experience with the Class III and IV mutations but I know others do and they'll jump on with great information and insight.

I'm sure mommy and daddy are questioning anything and everything at this point. You guys have been on a crazy ride with the different diagnosis opinions. Mild or not, it is so much better to have the diagnosis and treat it agressively now. There is every reason to believe that your beautiful granddaughter will grow and thrive and live to be a granny herself.

Best wishes to all of you <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome back - I wish it were under different circumstances.

I don't have any experience with the Class III and IV mutations but I know others do and they'll jump on with great information and insight.

I'm sure mommy and daddy are questioning anything and everything at this point. You guys have been on a crazy ride with the different diagnosis opinions. Mild or not, it is so much better to have the diagnosis and treat it agressively now. There is every reason to believe that your beautiful granddaughter will grow and thrive and live to be a granny herself.

Best wishes to all of you <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome back - I wish it were under different circumstances.

I don't have any experience with the Class III and IV mutations but I know others do and they'll jump on with great information and insight.

I'm sure mommy and daddy are questioning anything and everything at this point. You guys have been on a crazy ride with the different diagnosis opinions. Mild or not, it is so much better to have the diagnosis and treat it agressively now. There is every reason to believe that your beautiful granddaughter will grow and thrive and live to be a granny herself.

Best wishes to all of you <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome back - I wish it were under different circumstances.

I don't have any experience with the Class III and IV mutations but I know others do and they'll jump on with great information and insight.

I'm sure mommy and daddy are questioning anything and everything at this point. You guys have been on a crazy ride with the different diagnosis opinions. Mild or not, it is so much better to have the diagnosis and treat it agressively now. There is every reason to believe that your beautiful granddaughter will grow and thrive and live to be a granny herself.

Best wishes to all of you <img src="i/expressions/heart.gif" border="0">

 

[JORDYSMOM]

Hi Grannylana. I'm sorry you are back, but I am glad that your granddaughter can now receive the proper care. I hope things settle down for her parents soon.

I can understand their panick, and the decision to move, but I would strongly recommend they come to this site. The e-patients here take ideas and information to their CF clinics and docs, and they receive better care for what they've learned here. No matter where you are in the country, you can have the best care. I've learned more from this site than any doctor or clinic I've been to.

I wish your family the best. I hope you will stick around and keep us posted on Ely.

Stacey

 

[JORDYSMOM]

Hi Grannylana. I'm sorry you are back, but I am glad that your granddaughter can now receive the proper care. I hope things settle down for her parents soon.

I can understand their panick, and the decision to move, but I would strongly recommend they come to this site. The e-patients here take ideas and information to their CF clinics and docs, and they receive better care for what they've learned here. No matter where you are in the country, you can have the best care. I've learned more from this site than any doctor or clinic I've been to.

I wish your family the best. I hope you will stick around and keep us posted on Ely.

Stacey

 

[JORDYSMOM]

Hi Grannylana. I'm sorry you are back, but I am glad that your granddaughter can now receive the proper care. I hope things settle down for her parents soon.

I can understand their panick, and the decision to move, but I would strongly recommend they come to this site. The e-patients here take ideas and information to their CF clinics and docs, and they receive better care for what they've learned here. No matter where you are in the country, you can have the best care. I've learned more from this site than any doctor or clinic I've been to.

I wish your family the best. I hope you will stick around and keep us posted on Ely.

Stacey

 

[JORDYSMOM]

Hi Grannylana. I'm sorry you are back, but I am glad that your granddaughter can now receive the proper care. I hope things settle down for her parents soon.

I can understand their panick, and the decision to move, but I would strongly recommend they come to this site. The e-patients here take ideas and information to their CF clinics and docs, and they receive better care for what they've learned here. No matter where you are in the country, you can have the best care. I've learned more from this site than any doctor or clinic I've been to.

I wish your family the best. I hope you will stick around and keep us posted on Ely.

Stacey

 

[JORDYSMOM]

Hi Grannylana. I'm sorry you are back, but I am glad that your granddaughter can now receive the proper care. I hope things settle down for her parents soon.

I can understand their panick, and the decision to move, but I would strongly recommend they come to this site. The e-patients here take ideas and information to their CF clinics and docs, and they receive better care for what they've learned here. No matter where you are in the country, you can have the best care. I've learned more from this site than any doctor or clinic I've been to.

I wish your family the best. I hope you will stick around and keep us posted on Ely.

Stacey

 

[valigirl21]

How old is your granddaughter? My son is 8, almost 9, and he had 3 borderline sweat tests, but his genetics tests were negative. However, he is still being treated as a CF patient. They call it CF w/unknown mutations. I hope everything goes well for your family. This is a great place for support.

 

[valigirl21]

How old is your granddaughter? My son is 8, almost 9, and he had 3 borderline sweat tests, but his genetics tests were negative. However, he is still being treated as a CF patient. They call it CF w/unknown mutations. I hope everything goes well for your family. This is a great place for support.

 

[valigirl21]

How old is your granddaughter? My son is 8, almost 9, and he had 3 borderline sweat tests, but his genetics tests were negative. However, he is still being treated as a CF patient. They call it CF w/unknown mutations. I hope everything goes well for your family. This is a great place for support.

 

[valigirl21]

How old is your granddaughter? My son is 8, almost 9, and he had 3 borderline sweat tests, but his genetics tests were negative. However, he is still being treated as a CF patient. They call it CF w/unknown mutations. I hope everything goes well for your family. This is a great place for support.

 

[valigirl21]

How old is your granddaughter? My son is 8, almost 9, and he had 3 borderline sweat tests, but his genetics tests were negative. However, he is still being treated as a CF patient. They call it CF w/unknown mutations. I hope everything goes well for your family. This is a great place for support.