my 6 day old daughter was just diagnosed

2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> Weird, I have a 2002 Wrangler X</end quote></div> </P>
<P> </P>
<P>hey alright!  i'll let you know when we do the jeepin fundraisers <img src="i/expressions/face-icon-small-smile.gif" border="0">  i've had something like 23 jeeps in the last 5 years.  I buy em and fix them, restore them, or just make them look cool.  Then get bored and sell them lol.  </P>
<P> </P>
<P>Here's my toy now (although we'll see how long until it's for sale to pay for meds and what not)  this was heading to a "topless for tata's ride" (a cancer benifit ride)</P>
<P> </P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-03-31_19-22-47_118.jpg"></P>
<P> </P>
<P> </P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> Weird, I have a 2002 Wrangler X</end quote> </P>
<P></P>
<P>hey alright! i'll let you know when we do the jeepin fundraisers <img src="i/expressions/face-icon-small-smile.gif" border="0"> i've had something like 23 jeeps in the last 5 years. I buy em and fix them, restore them, or just make them look cool. Then get bored and sell them lol. </P>
<P></P>
<P>Here's my toy now (although we'll see how long until it's for sale to pay for meds and what not) this was heading to a "topless for tata's ride" (a cancer benifit ride)</P>
<P></P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-03-31_19-22-47_118.jpg"></P>
<P></P>
<P></P>
 
2

2k2wranglerx

New member
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> Weird, I have a 2002 Wrangler X</end quote> </P>
<P></P>
<P>hey alright! i'll let you know when we do the jeepin fundraisers <img src="i/expressions/face-icon-small-smile.gif" border="0"> i've had something like 23 jeeps in the last 5 years. I buy em and fix them, restore them, or just make them look cool. Then get bored and sell them lol. </P>
<P></P>
<P>Here's my toy now (although we'll see how long until it's for sale to pay for meds and what not) this was heading to a "topless for tata's ride" (a cancer benifit ride)</P>
<P></P>
<P><IMG alt="" src="http://i72.photobucket.com/albums/i199/46willys/2011-03-31_19-22-47_118.jpg"></P>
<P></P>
<P></P>
 
A

anien2

New member
Sorry to hear about your terrible new. I got mine three months ago. We already had a 2 year girl and we were expecting a baby boy, when the kid was born after a newborn test doctors found out that he had CF, while they were telling us what was all this about I asked about the symptoms, they told us about the salty sweat,smelly defecations and all time mucus, that was when we realized that our suposed to be healthy daughter also had CF. It is terrible and shocking, the first idea that came to my mind when we were leaving the hospital was me and my wife attending to my kids' funeral. But you know what?? we started the therapy with both of them and discovered that our 2 years old girl could be much better than what we considered "normal" a few weeks ago. The mucus went away, and she became a much more active girl, she sleeps much better, is growing up and wining weight like crazy. As doctors say its like she just put off a 20 pound backpack, she is even a more affective girl (i suppose that if you feel all the time kind of tired, dont sleep well and have mucus your temper wont be the best). So we know that doing all this things is the best for them, and routine will push you ahead so doing it wont be hard at all in a couple of months. We still have low moments, they dont like physioterapy at all, but crying helps getting the mucus out, so it is wellcome, and sometimes I find my wife crying thinking about the idea of not having grandkids or having to take care of our kids in 40 years time when we may be too old for that... But the truth is that the girl is better than ever and the baby boy will never know what is like to live any other way, so since we know that therapy works all we have to do is keep it serious, work on it daily, and keep the faith on medicine until doctors find a medication that cures all this. Speaking about faith... I have pending a close conversation with God about all this stuff when we meet. Too bad I dont have any pics of my kids overhere, I think you really should see them, wouldnt believe they have any problems. Postscript: sorry about my english, I am not a native speaker
 
A

anien2

New member
Sorry to hear about your terrible new. I got mine three months ago. We already had a 2 year girl and we were expecting a baby boy, when the kid was born after a newborn test doctors found out that he had CF, while they were telling us what was all this about I asked about the symptoms, they told us about the salty sweat,smelly defecations and all time mucus, that was when we realized that our suposed to be healthy daughter also had CF. It is terrible and shocking, the first idea that came to my mind when we were leaving the hospital was me and my wife attendingto my kids' funeral. But you know what?? we started the therapy with both of them and discovered that our 2 years old girl could be much better than what we considered "normal" a few weeks ago. The mucus went away, and she became a much more active girl, she sleeps much better, is growing up and wining weight like crazy. As doctors say its like she just put off a 20 pound backpack, she is even a more affective girl (i suppose that if you feel all the time kind of tired, dont sleep well and have mucus your temper wont be the best). So we know that doing all this things is the best for them, and routine will push you ahead so doing it wont be hard at all in a couple of months. We still have low moments, they dont like physioterapy at all, but crying helps getting the mucus out, so it is wellcome, and sometimes I find my wife crying thinking about the idea of not having grandkids or having to take care of our kids in 40 years time when we may be too old for that... But the truth is that the girl is better than ever and the baby boy will never know what is like to live any other way, so since we know that therapy works all we have to do is keep it serious, work on it daily, and keep the faith on medicine until doctors find a medication that cures all this. Speaking about faith... I have pending a close conversation with God about all this stuff when we meet. Too bad I dont have any pics of my kids overhere, I think you really should see them, wouldnt believe they have any problems. Postscript: sorry about my english, I am not a native speaker
 
A

anien2

New member
Sorry to hear about your terrible new. I got mine three months ago. We already had a 2 year girl and we were expecting a baby boy, when the kid was born after a newborn test doctors found out that he had CF, while they were telling us what was all this about I asked about the symptoms, they told us about the salty sweat,smelly defecations and all time mucus, that was when we realized that our suposed to be healthy daughter also had CF. <BR><BR>It is terrible and shocking, the first idea that came to my mind when we were leaving the hospital was me and my wife attendingto my kids' funeral. <BR><BR>But you know what?? we started the therapy with both of them and discovered that our 2 years old girl could be much better than what we considered "normal" a few weeks ago. The mucus went away, and she became a much more active girl, she sleeps much better, is growing up and wining weight like crazy. As doctors say its like she just put off a 20 pound backpack, she is even a more affective girl (i suppose that if you feel all the time kind of tired, dont sleep well and have mucus your temper wont be the best). So we know that doing all this things is the best for them, and routine will push you ahead so doing it wont be hard at all in a couple of months. <BR><BR>We still have low moments, they dont like physioterapy at all, but crying helps getting the mucus out, so it is wellcome, and sometimes I find my wife crying thinking about the idea of not having grandkids or having to take care of our kids in 40 years time when we may be too old for that... But the truth is that the girl is better than ever and the baby boy will never know what is like to live any other way, so since we know that therapy works all we have to do is keep it serious, work on it daily, and keep the faith on medicine until doctors find a medication that cures all this. <BR><BR>Speaking about faith... I have pending a close conversation with God about all this stuff when we meet. <BR><BR>Too bad I dont have any pics of my kids overhere, I think you really should see them, wouldnt believe they have any problems. <BR><BR>Postscript: sorry about my english, I am not a native speaker
 
C

CrisDopher

New member
Ah, the old double ?F508.  A classic combo.  Which is to say, that's the most common among us, so your daughter's in good company.  Being so common, this mutation's expressions are what get targeted by CF research.  <br><br>There's a lot of great treatment now.  So don't worry yourself to death - just be on top of the aggressive therapies.  As others have said, get on it NOW, make it habit for life, and she'll have a good, LONG life - probably outlive you, in fact.  Many, many cystics have lung functions well above 100% of normal because they're so active and fit and do their treatments and can maintain that well into middle or late adulthood.  <br><br>The nutrition is a separate issue from the lungs and must also get due attention.  You'll soon know if your daughter needs supplemental enzymes or not and if she needs supplemental feeding via g-tube or not.  I happened to not need a lot of enzymes, having partial pancreatic function.  Some cystics don't need them at all.  Still, the norm is that she'll need some enzymes.<br><br>Anyway, I wish you all the best.  <br><br>Cris Dopher<br>turning 40 NEXT WEEK!<br>
 
C

CrisDopher

New member
Ah, the old double ?F508. A classic combo. Which is to say, that's the most common among us, so your daughter's in good company. Being so common, this mutation's expressions are what get targeted by CF research. <br><br>There's a lot of great treatment now. So don't worry yourself to death - just be on top of the aggressive therapies. As others have said, get on it NOW, make it habit for life, and she'll have a good, LONG life - probably outlive you, in fact. Many, many cystics have lung functions well above 100% of normal because they're so active and fit and do their treatments and can maintain that well into middle or late adulthood. <br><br>The nutrition is a separate issue from the lungs and must also get due attention. You'll soon know if your daughter needs supplemental enzymes or not and if she needs supplemental feeding via g-tube or not. I happened to not need a lot of enzymes, having partial pancreatic function. Some cystics don't need them at all. Still, the norm is that she'll need some enzymes.<br><br>Anyway, I wish you all the best. <br><br>Cris Dopher<br>turning 40 NEXT WEEK!<br>
 
C

CrisDopher

New member
Ah, the old double ?F508. A classic combo. Which is to say, that's the most common among us, so your daughter's in good company. Being so common, this mutation's expressions are what get targeted by CF research. <br><br>There's a lot of great treatment now. So don't worry yourself to death - just be on top of the aggressive therapies. As others have said, get on it NOW, make it habit for life, and she'll have a good, LONG life - probably outlive you, in fact. Many, many cystics have lung functions well above 100% of normal because they're so active and fit and do their treatments and can maintain that well into middle or late adulthood. <br><br>The nutrition is a separate issue from the lungs and must also get due attention. You'll soon know if your daughter needs supplemental enzymes or not and if she needs supplemental feeding via g-tube or not. I happened to not need a lot of enzymes, having partial pancreatic function. Some cystics don't need them at all. Still, the norm is that she'll need some enzymes.<br><br>Anyway, I wish you all the best. <br><br>Cris Dopher<br>turning 40 NEXT WEEK!<br>
 
C

chicagocubsmom

New member
Congratulations on your new baby girl! I know that in the first few months of my son's life I would look at people like they had two heads when they told me congratulations on our little guy. I wanted to yell "Don't you know he has CF?!?" It took me a while to realize that they couldn't see that about him - they just saw his cuteness. And that's actually the kind thing about the disease. Our children will be as intelligent as they are supposed to be, their personalities aren't affected, their motor skills, their communication abilities - all intact. Now I've learned to smile and say thank you when strangers coo over our son but it was a tough couple of months earlier this year.

And all I think of when I look at pictures of your little girl is "She is SO cute!"

In any case, I wanted to respond about your altitude comment. I'm not a medical expert and we're only a few months into this CF thing. But I have talked to some adults who have CF and one (40 years old) did mention that she goes to Mexico often and she feels a lot better at sea level. Just wanted to pass that along to you. I don't think it matters or hurts to be at high altitude but when she gets older she may appreciate that seaside vacation. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

chicagocubsmom

New member
Congratulations on your new baby girl! I know that in the first few months of my son's life I would look at people like they had two heads when they told me congratulations on our little guy. I wanted to yell "Don't you know he has CF?!?" It took me a while to realize that they couldn't see that about him - they just saw his cuteness. And that's actually the kind thing about the disease. Our children will be as intelligent as they are supposed to be, their personalities aren't affected, their motor skills, their communication abilities - all intact. Now I've learned to smile and say thank you when strangers coo over our son but it was a tough couple of months earlier this year.

And all I think of when I look at pictures of your little girl is "She is SO cute!"

In any case, I wanted to respond about your altitude comment. I'm not a medical expert and we're only a few months into this CF thing. But I have talked to some adults who have CF and one (40 years old) did mention that she goes to Mexico often and she feels a lot better at sea level. Just wanted to pass that along to you. I don't think it matters or hurts to be at high altitude but when she gets older she may appreciate that seaside vacation. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

chicagocubsmom

New member
Congratulations on your new baby girl! I know that in the first few months of my son's life I would look at people like they had two heads when they told me congratulations on our little guy. I wanted to yell "Don't you know he has CF?!?" It took me a while to realize that they couldn't see that about him - they just saw his cuteness. And that's actually the kind thing about the disease. Our children will be as intelligent as they are supposed to be, their personalities aren't affected, their motor skills, their communication abilities - all intact. Now I've learned to smile and say thank you when strangers coo over our son but it was a tough couple of months earlier this year.
<br />
<br />And all I think of when I look at pictures of your little girl is "She is SO cute!"
<br />
<br />In any case, I wanted to respond about your altitude comment. I'm not a medical expert and we're only a few months into this CF thing. But I have talked to some adults who have CF and one (40 years old) did mention that she goes to Mexico often and she feels a lot better at sea level. Just wanted to pass that along to you. I don't think it matters or hurts to be at high altitude but when she gets older she may appreciate that seaside vacation. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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