One Year Anniversay of Diagnosis

B

BabyBeauty

New member
So yesterday was the one year anniversary of my daughter's diagnosis. I thought I would have taken it a lot harder. I will admit there were a few tears, but I wiped them away and went on with my day. I did some reflecting and I don't know how I would have held my head up if it hadn't been for this website. It felt like my only connection to the world for awhile...meaning my new CF world. Whenever I had questions or concerns I have always had support. So thank you to everyone!

Also I am going to post my very first post on this website. It is amazing how far we have come!!

<i>We found out on Friday that our beautiful little baby has CF. When she was 2 weeks we got a letter from an initiative the AZ government has taken on for newborn screening. It stated that Avery was a carrier of CF and further testing needed to be done. Nothing more than that - no information on CF - no contact phone numbers nothing. So of course my husband freak out and start researching. We came to the conclusion that she was probably just a carrier and the odds of her actually having CF were slim since no one in our family has CF. We took her in for a sweat test on Thursday and got the horrible phone call on Friday morning from our pediatrician that she has CF.

It was the worst phone call I could have ever recieved. I am soooo mad right now! I never knew I could love someone so much. Avery is the best thing I have ever done and now I feel like we have a death cloud over us. I know people keep telling me that there are so many advances and that CF is not what it used to be, but the thought of her leaving us before I am gone scares me to the bone. I have faced a lot of medical issues in my life and I never wanted my children to go through what I have had to deal with. Now my beautiful girl is going to have to face more tests, pills, treatments than I could have ever dealt with. It is not fair! I want to take this away from her.

My husband and I are taking turns breaking down. It is so hard to see my strong husband break down into tears. I am hoping and praying the pain of this will lessen with time and answers. We have an appt with the CF center this week. Does anyone have any insight into how this meeting will go? Do you walk away feeling better or feeling overwhelmed and worse? I cannot imagine crying anymore than I have in the last several days. </i>
 
B

BabyBeauty

New member
So yesterday was the one year anniversary of my daughter's diagnosis. I thought I would have taken it a lot harder. I will admit there were a few tears, but I wiped them away and went on with my day. I did some reflecting and I don't know how I would have held my head up if it hadn't been for this website. It felt like my only connection to the world for awhile...meaning my new CF world. Whenever I had questions or concerns I have always had support. So thank you to everyone!

Also I am going to post my very first post on this website. It is amazing how far we have come!!

<i>We found out on Friday that our beautiful little baby has CF. When she was 2 weeks we got a letter from an initiative the AZ government has taken on for newborn screening. It stated that Avery was a carrier of CF and further testing needed to be done. Nothing more than that - no information on CF - no contact phone numbers nothing. So of course my husband freak out and start researching. We came to the conclusion that she was probably just a carrier and the odds of her actually having CF were slim since no one in our family has CF. We took her in for a sweat test on Thursday and got the horrible phone call on Friday morning from our pediatrician that she has CF.

It was the worst phone call I could have ever recieved. I am soooo mad right now! I never knew I could love someone so much. Avery is the best thing I have ever done and now I feel like we have a death cloud over us. I know people keep telling me that there are so many advances and that CF is not what it used to be, but the thought of her leaving us before I am gone scares me to the bone. I have faced a lot of medical issues in my life and I never wanted my children to go through what I have had to deal with. Now my beautiful girl is going to have to face more tests, pills, treatments than I could have ever dealt with. It is not fair! I want to take this away from her.

My husband and I are taking turns breaking down. It is so hard to see my strong husband break down into tears. I am hoping and praying the pain of this will lessen with time and answers. We have an appt with the CF center this week. Does anyone have any insight into how this meeting will go? Do you walk away feeling better or feeling overwhelmed and worse? I cannot imagine crying anymore than I have in the last several days. </i>
 
B

BabyBeauty

New member
So yesterday was the one year anniversary of my daughter's diagnosis. I thought I would have taken it a lot harder. I will admit there were a few tears, but I wiped them away and went on with my day. I did some reflecting and I don't know how I would have held my head up if it hadn't been for this website. It felt like my only connection to the world for awhile...meaning my new CF world. Whenever I had questions or concerns I have always had support. So thank you to everyone!

Also I am going to post my very first post on this website. It is amazing how far we have come!!

<i>We found out on Friday that our beautiful little baby has CF. When she was 2 weeks we got a letter from an initiative the AZ government has taken on for newborn screening. It stated that Avery was a carrier of CF and further testing needed to be done. Nothing more than that - no information on CF - no contact phone numbers nothing. So of course my husband freak out and start researching. We came to the conclusion that she was probably just a carrier and the odds of her actually having CF were slim since no one in our family has CF. We took her in for a sweat test on Thursday and got the horrible phone call on Friday morning from our pediatrician that she has CF.

It was the worst phone call I could have ever recieved. I am soooo mad right now! I never knew I could love someone so much. Avery is the best thing I have ever done and now I feel like we have a death cloud over us. I know people keep telling me that there are so many advances and that CF is not what it used to be, but the thought of her leaving us before I am gone scares me to the bone. I have faced a lot of medical issues in my life and I never wanted my children to go through what I have had to deal with. Now my beautiful girl is going to have to face more tests, pills, treatments than I could have ever dealt with. It is not fair! I want to take this away from her.

My husband and I are taking turns breaking down. It is so hard to see my strong husband break down into tears. I am hoping and praying the pain of this will lessen with time and answers. We have an appt with the CF center this week. Does anyone have any insight into how this meeting will go? Do you walk away feeling better or feeling overwhelmed and worse? I cannot imagine crying anymore than I have in the last several days. </i>
 
B

BabyBeauty

New member
So yesterday was the one year anniversary of my daughter's diagnosis. I thought I would have taken it a lot harder. I will admit there were a few tears, but I wiped them away and went on with my day. I did some reflecting and I don't know how I would have held my head up if it hadn't been for this website. It felt like my only connection to the world for awhile...meaning my new CF world. Whenever I had questions or concerns I have always had support. So thank you to everyone!

Also I am going to post my very first post on this website. It is amazing how far we have come!!

<i>We found out on Friday that our beautiful little baby has CF. When she was 2 weeks we got a letter from an initiative the AZ government has taken on for newborn screening. It stated that Avery was a carrier of CF and further testing needed to be done. Nothing more than that - no information on CF - no contact phone numbers nothing. So of course my husband freak out and start researching. We came to the conclusion that she was probably just a carrier and the odds of her actually having CF were slim since no one in our family has CF. We took her in for a sweat test on Thursday and got the horrible phone call on Friday morning from our pediatrician that she has CF.

It was the worst phone call I could have ever recieved. I am soooo mad right now! I never knew I could love someone so much. Avery is the best thing I have ever done and now I feel like we have a death cloud over us. I know people keep telling me that there are so many advances and that CF is not what it used to be, but the thought of her leaving us before I am gone scares me to the bone. I have faced a lot of medical issues in my life and I never wanted my children to go through what I have had to deal with. Now my beautiful girl is going to have to face more tests, pills, treatments than I could have ever dealt with. It is not fair! I want to take this away from her.

My husband and I are taking turns breaking down. It is so hard to see my strong husband break down into tears. I am hoping and praying the pain of this will lessen with time and answers. We have an appt with the CF center this week. Does anyone have any insight into how this meeting will go? Do you walk away feeling better or feeling overwhelmed and worse? I cannot imagine crying anymore than I have in the last several days. </i>
 
B

BabyBeauty

New member
So yesterday was the one year anniversary of my daughter's diagnosis. I thought I would have taken it a lot harder. I will admit there were a few tears, but I wiped them away and went on with my day. I did some reflecting and I don't know how I would have held my head up if it hadn't been for this website. It felt like my only connection to the world for awhile...meaning my new CF world. Whenever I had questions or concerns I have always had support. So thank you to everyone!
<br />
<br />Also I am going to post my very first post on this website. It is amazing how far we have come!!
<br />
<br /><i>We found out on Friday that our beautiful little baby has CF. When she was 2 weeks we got a letter from an initiative the AZ government has taken on for newborn screening. It stated that Avery was a carrier of CF and further testing needed to be done. Nothing more than that - no information on CF - no contact phone numbers nothing. So of course my husband freak out and start researching. We came to the conclusion that she was probably just a carrier and the odds of her actually having CF were slim since no one in our family has CF. We took her in for a sweat test on Thursday and got the horrible phone call on Friday morning from our pediatrician that she has CF.
<br />
<br />It was the worst phone call I could have ever recieved. I am soooo mad right now! I never knew I could love someone so much. Avery is the best thing I have ever done and now I feel like we have a death cloud over us. I know people keep telling me that there are so many advances and that CF is not what it used to be, but the thought of her leaving us before I am gone scares me to the bone. I have faced a lot of medical issues in my life and I never wanted my children to go through what I have had to deal with. Now my beautiful girl is going to have to face more tests, pills, treatments than I could have ever dealt with. It is not fair! I want to take this away from her.
<br />
<br />My husband and I are taking turns breaking down. It is so hard to see my strong husband break down into tears. I am hoping and praying the pain of this will lessen with time and answers. We have an appt with the CF center this week. Does anyone have any insight into how this meeting will go? Do you walk away feeling better or feeling overwhelmed and worse? I cannot imagine crying anymore than I have in the last several days. </i>
 
J

JazzysMom

New member
Although the reason for the Anniversary stinks.....it also was the only way to become part of our family!


HUGS
 
J

JazzysMom

New member
Although the reason for the Anniversary stinks.....it also was the only way to become part of our family!


HUGS
 
J

JazzysMom

New member
Although the reason for the Anniversary stinks.....it also was the only way to become part of our family!


HUGS
 
J

JazzysMom

New member
Although the reason for the Anniversary stinks.....it also was the only way to become part of our family!


HUGS
 
J

JazzysMom

New member
Although the reason for the Anniversary stinks.....it also was the only way to become part of our family!
<br />
<br />
<br />HUGS
 
M

Mommafirst

Guest
That first year is really hard, but it does get easier and it is great to be able to reflect back. We are coming up on our third year anniversary in a few weeks! YIKES!! Time flies!!!
 
M

Mommafirst

Guest
That first year is really hard, but it does get easier and it is great to be able to reflect back. We are coming up on our third year anniversary in a few weeks! YIKES!! Time flies!!!
 
M

Mommafirst

Guest
That first year is really hard, but it does get easier and it is great to be able to reflect back. We are coming up on our third year anniversary in a few weeks! YIKES!! Time flies!!!
 
M

Mommafirst

Guest
That first year is really hard, but it does get easier and it is great to be able to reflect back. We are coming up on our third year anniversary in a few weeks! YIKES!! Time flies!!!
 
M

Mommafirst

Guest
That first year is really hard, but it does get easier and it is great to be able to reflect back. We are coming up on our third year anniversary in a few weeks! YIKES!! Time flies!!!
 
A

amyr

New member
This post is amazing because it is SO TRUE!! It is the year mark for us too and if not for this forum we would still be trying to figure out what was wrong with my kids as they continued to suffer permenant damage. I pushed for more testing because of all the responces and learned so much from everyone here and and because of that my family now has HOPE!!This is an AMAZING community full of wonderful people!!
 
A

amyr

New member
This post is amazing because it is SO TRUE!! It is the year mark for us too and if not for this forum we would still be trying to figure out what was wrong with my kids as they continued to suffer permenant damage. I pushed for more testing because of all the responces and learned so much from everyone here and and because of that my family now has HOPE!!This is an AMAZING community full of wonderful people!!
 
A

amyr

New member
This post is amazing because it is SO TRUE!! It is the year mark for us too and if not for this forum we would still be trying to figure out what was wrong with my kids as they continued to suffer permenant damage. I pushed for more testing because of all the responces and learned so much from everyone here and and because of that my family now has HOPE!!This is an AMAZING community full of wonderful people!!
 
A

amyr

New member
This post is amazing because it is SO TRUE!! It is the year mark for us too and if not for this forum we would still be trying to figure out what was wrong with my kids as they continued to suffer permenant damage. I pushed for more testing because of all the responces and learned so much from everyone here and and because of that my family now has HOPE!!This is an AMAZING community full of wonderful people!!
 
A

amyr

New member
This post is amazing because it is SO TRUE!! It is the year mark for us too and if not for this forum we would still be trying to figure out what was wrong with my kids as they continued to suffer permenant damage. I pushed for more testing because of all the responces and learned so much from everyone here and and because of that my family now has HOPE!!This is an AMAZING community full of wonderful people!!
 
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