3wk old Diagnosed 11/15

[NancyLKF]

Hi! Welcome to the site and congratulations on the birth of your son! As you can tell from the amount of responses you've received, this site will be your best resource as you navigate through the CF world.
My daughter was born in Jan of 09 and diagnosed at 6 days old with CF. She is our first and there isn't a family history of CF, as is true for most families.
I cried when I read your post because it took me back to those horrible days and weeks surrounding Maggie's diagnosis. The guilt, the fear, the unknown. All I can say is that it does get better.
Maggie is a happy, healthy almost two year old who brightens our lives everyday. We have all the hope in the world that she will outlive us.
It is all overwhelming for you right now I'm sure. It hasn't been that long since I was in your spot. Please ask any questions you have. Don't hestitate if you need to vent. CF sucks and it takes getting use to and you'll have to make adjustments to the life you had planned and envisioned for your son and as a family. But you will still have a normal life - just different.
I'll be thinking of you. Please keep us posted on how you are all doing.

 

[NancyLKF]

Hi! Welcome to the site and congratulations on the birth of your son! As you can tell from the amount of responses you've received, this site will be your best resource as you navigate through the CF world.
<br />My daughter was born in Jan of 09 and diagnosed at 6 days old with CF. She is our first and there isn't a family history of CF, as is true for most families.
<br />I cried when I read your post because it took me back to those horrible days and weeks surrounding Maggie's diagnosis. The guilt, the fear, the unknown. All I can say is that it does get better.
<br />Maggie is a happy, healthy almost two year old who brightens our lives everyday. We have all the hope in the world that she will outlive us.
<br />It is all overwhelming for you right now I'm sure. It hasn't been that long since I was in your spot. Please ask any questions you have. Don't hestitate if you need to vent. CF sucks and it takes getting use to and you'll have to make adjustments to the life you had planned and envisioned for your son and as a family. But you will still have a normal life - just different.
<br />I'll be thinking of you. Please keep us posted on how you are all doing.

 

[AleksandraKaczynska]

Hi,
Congartulations. You have a wonderful son.
You're post made me cry also - brought back memories of how our daughter was dx. The difference is that she was - and still is prefectly healthy. She looks it and is. Joanna is 3. try looking up
<a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>We go to swimmimg lessons and gimnastic. We decided no to go to kindergarden. We are now expecting a new girl - and are all happy about this.
As we know she has cf - we are lucky - we know how to better take care of her. So she has a chance at a long and happy life.
We have no cf history in our family - so nobody could help us and in truth they still don't understand or choose not to - I found help in a fund for families and sick with cf.
The first time I heard that I'm lucky I know I have a cf child made me realise I am. I have a wonderful daughter running around the house and am not alone at christmas with my husband. With time we learn more and more about her health and this lets us keep her healthy - more healthy then most kids I know her age.
You'll propobly have to change some of your life style - but all babies do that to a family.
I did alot of learning to keep my mind occupied (not to give up into fear and helpfulness) and went to meetings from the fund. It helped me and still does. You are not guilty for this - no one is. We all carry a few recesive genes.

MIZZVIKVIK - I'm not sure what abnormal means - I guess there is a range where there is susspision for the ilness and needs more testing. Some screening tests are a mess since the baby has your hormons still when he has his blood taken for the test. it's a wild guess though. Hang on - it's just a little over two weeks.

 

[AleksandraKaczynska]

Hi,
Congartulations. You have a wonderful son.
You're post made me cry also - brought back memories of how our daughter was dx. The difference is that she was - and still is prefectly healthy. She looks it and is. Joanna is 3. try looking up
<a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>We go to swimmimg lessons and gimnastic. We decided no to go to kindergarden. We are now expecting a new girl - and are all happy about this.
As we know she has cf - we are lucky - we know how to better take care of her. So she has a chance at a long and happy life.
We have no cf history in our family - so nobody could help us and in truth they still don't understand or choose not to - I found help in a fund for families and sick with cf.
The first time I heard that I'm lucky I know I have a cf child made me realise I am. I have a wonderful daughter running around the house and am not alone at christmas with my husband. With time we learn more and more about her health and this lets us keep her healthy - more healthy then most kids I know her age.
You'll propobly have to change some of your life style - but all babies do that to a family.
I did alot of learning to keep my mind occupied (not to give up into fear and helpfulness) and went to meetings from the fund. It helped me and still does. You are not guilty for this - no one is. We all carry a few recesive genes.

MIZZVIKVIK - I'm not sure what abnormal means - I guess there is a range where there is susspision for the ilness and needs more testing. Some screening tests are a mess since the baby has your hormons still when he has his blood taken for the test. it's a wild guess though. Hang on - it's just a little over two weeks.

 

[AleksandraKaczynska]

Hi,
<br />Congartulations. You have a wonderful son.
<br />You're post made me cry also - brought back memories of how our daughter was dx. The difference is that she was - and still is prefectly healthy. She looks it and is. Joanna is 3. try looking up
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a><br />We go to swimmimg lessons and gimnastic. We decided no to go to kindergarden. We are now expecting a new girl - and are all happy about this.
<br />As we know she has cf - we are lucky - we know how to better take care of her. So she has a chance at a long and happy life.
<br />We have no cf history in our family - so nobody could help us and in truth they still don't understand or choose not to - I found help in a fund for families and sick with cf.
<br />The first time I heard that I'm lucky I know I have a cf child made me realise I am. I have a wonderful daughter running around the house and am not alone at christmas with my husband. With time we learn more and more about her health and this lets us keep her healthy - more healthy then most kids I know her age.
<br />You'll propobly have to change some of your life style - but all babies do that to a family.
<br />I did alot of learning to keep my mind occupied (not to give up into fear and helpfulness) and went to meetings from the fund. It helped me and still does. You are not guilty for this - no one is. We all carry a few recesive genes.
<br />
<br />MIZZVIKVIK - I'm not sure what abnormal means - I guess there is a range where there is susspision for the ilness and needs more testing. Some screening tests are a mess since the baby has your hormons still when he has his blood taken for the test. it's a wild guess though. Hang on - it's just a little over two weeks.

 

[imagine04]

I just have to say, Thank You to all of you for your messages both here and in PM's. They are so appreciated! Hearing similar stories is helpful. I wish none of us had to be here but from what i can already see i've found a perfect support system when it comes to online support.

We bring Parker in tomorrow morning to meet the rest of his Clinic Team and learn as much as we possibly can in our first meeting. Please keep us in your thoughts and we will do the same for all of you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

I just have to say, Thank You to all of you for your messages both here and in PM's. They are so appreciated! Hearing similar stories is helpful. I wish none of us had to be here but from what i can already see i've found a perfect support system when it comes to online support.

We bring Parker in tomorrow morning to meet the rest of his Clinic Team and learn as much as we possibly can in our first meeting. Please keep us in your thoughts and we will do the same for all of you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

I just have to say, Thank You to all of you for your messages both here and in PM's. They are so appreciated! Hearing similar stories is helpful. I wish none of us had to be here but from what i can already see i've found a perfect support system when it comes to online support.
<br />
<br />We bring Parker in tomorrow morning to meet the rest of his Clinic Team and learn as much as we possibly can in our first meeting. Please keep us in your thoughts and we will do the same for all of you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AleksandraKaczynska]

Keep you in mu thoughts - good luck.
We are going monday for a cheque up to our hospital. After 3 years I still am very nervous about it. Always am.
Write back how you managed the first visit.

 

[AleksandraKaczynska]

Keep you in mu thoughts - good luck.
We are going monday for a cheque up to our hospital. After 3 years I still am very nervous about it. Always am.
Write back how you managed the first visit.

 

[AleksandraKaczynska]

Keep you in mu thoughts - good luck.
<br />We are going monday for a cheque up to our hospital. After 3 years I still am very nervous about it. Always am.
<br />Write back how you managed the first visit.