Newly diagnosed and scared to death

ktsmom · Mar 25, 2008

Take it from a fellow "whatifer" - by all means research and read until you can't stand it anymore (and beware of outdated information that will only scare the pants off you!) The knowledge that you gain will empower you as you go and your family go through your journey.

Like you, I also wanted, absolutely needed, to know how this would turn out for my daughter - what will happen as time goes by, who will be there for her, etc. I couldn't find the answer. And I gradually learned to accept that. It is definitely tough and I wish I could live these next few months for you.

Our lives have turned completely upside down and 19 months or so into this journey I still have days where I feel completely overwhelmed, sad, frustrated. Hang in there - it will get better, but it will probably take some time.

ktsmom · Mar 25, 2008

Take it from a fellow "whatifer" - by all means research and read until you can't stand it anymore (and beware of outdated information that will only scare the pants off you!) The knowledge that you gain will empower you as you go and your family go through your journey.

Like you, I also wanted, absolutely needed, to know how this would turn out for my daughter - what will happen as time goes by, who will be there for her, etc. I couldn't find the answer. And I gradually learned to accept that. It is definitely tough and I wish I could live these next few months for you.

Our lives have turned completely upside down and 19 months or so into this journey I still have days where I feel completely overwhelmed, sad, frustrated. Hang in there - it will get better, but it will probably take some time.

ktsmom · Mar 25, 2008

Take it from a fellow "whatifer" - by all means research and read until you can't stand it anymore (and beware of outdated information that will only scare the pants off you!) The knowledge that you gain will empower you as you go and your family go through your journey.

Like you, I also wanted, absolutely needed, to know how this would turn out for my daughter - what will happen as time goes by, who will be there for her, etc. I couldn't find the answer. And I gradually learned to accept that. It is definitely tough and I wish I could live these next few months for you.

Our lives have turned completely upside down and 19 months or so into this journey I still have days where I feel completely overwhelmed, sad, frustrated. Hang in there - it will get better, but it will probably take some time.

ktsmom · Mar 25, 2008

Take it from a fellow "whatifer" - by all means research and read until you can't stand it anymore (and beware of outdated information that will only scare the pants off you!) The knowledge that you gain will empower you as you go and your family go through your journey.

Like you, I also wanted, absolutely needed, to know how this would turn out for my daughter - what will happen as time goes by, who will be there for her, etc. I couldn't find the answer. And I gradually learned to accept that. It is definitely tough and I wish I could live these next few months for you.

Our lives have turned completely upside down and 19 months or so into this journey I still have days where I feel completely overwhelmed, sad, frustrated. Hang in there - it will get better, but it will probably take some time.

ktsmom · Mar 25, 2008

Take it from a fellow "whatifer" - by all means research and read until you can't stand it anymore (and beware of outdated information that will only scare the pants off you!) The knowledge that you gain will empower you as you go and your family go through your journey.
<br />
<br />Like you, I also wanted, absolutely needed, to know how this would turn out for my daughter - what will happen as time goes by, who will be there for her, etc. I couldn't find the answer. And I gradually learned to accept that. It is definitely tough and I wish I could live these next few months for you.
<br />
<br />Our lives have turned completely upside down and 19 months or so into this journey I still have days where I feel completely overwhelmed, sad, frustrated. Hang in there - it will get better, but it will probably take some time.

Rebjane · Mar 25, 2008

I also need to know everything; I can drive any doctor to the edge<img src="i/expressions/face-icon-small-wink.gif" border="0"> I feel better with all the information on the table, still it can get overwhelming. Your child will not be CF, your child will be a boy, with all his personality, who happens to have CF. As well as I am a dare I say it; a control freak! This is hard; nobody can control everything; nor can anyone predict anyone's future. So, it's a learning process; as with anything, time helps.

Rebjane · Mar 25, 2008

I also need to know everything; I can drive any doctor to the edge<img src="i/expressions/face-icon-small-wink.gif" border="0"> I feel better with all the information on the table, still it can get overwhelming. Your child will not be CF, your child will be a boy, with all his personality, who happens to have CF. As well as I am a dare I say it; a control freak! This is hard; nobody can control everything; nor can anyone predict anyone's future. So, it's a learning process; as with anything, time helps.

Rebjane · Mar 25, 2008

I also need to know everything; I can drive any doctor to the edge<img src="i/expressions/face-icon-small-wink.gif" border="0"> I feel better with all the information on the table, still it can get overwhelming. Your child will not be CF, your child will be a boy, with all his personality, who happens to have CF. As well as I am a dare I say it; a control freak! This is hard; nobody can control everything; nor can anyone predict anyone's future. So, it's a learning process; as with anything, time helps.

Rebjane · Mar 25, 2008

I also need to know everything; I can drive any doctor to the edge<img src="i/expressions/face-icon-small-wink.gif" border="0"> I feel better with all the information on the table, still it can get overwhelming. Your child will not be CF, your child will be a boy, with all his personality, who happens to have CF. As well as I am a dare I say it; a control freak! This is hard; nobody can control everything; nor can anyone predict anyone's future. So, it's a learning process; as with anything, time helps.

Rebjane · Mar 25, 2008

I also need to know everything; I can drive any doctor to the edge<img src="i/expressions/face-icon-small-wink.gif" border="0"> I feel better with all the information on the table, still it can get overwhelming. Your child will not be CF, your child will be a boy, with all his personality, who happens to have CF. As well as I am a dare I say it; a control freak! This is hard; nobody can control everything; nor can anyone predict anyone's future. So, it's a learning process; as with anything, time helps.

shimmereestar · Mar 25, 2008

Stay on this site, it has been such wonderful support for me. My Ellie was diagnosed at 2.5 months when she was failure to thrive. We were completely blown away, I had know idea I was a carrier. Like you, the only odd thing I thought was that she pooped a lot but I let it go because she was breastfed. In January we ended up in the hospital for a rash of all things. Later we found out it was malnutrition. We had two sweat tests but neither took so we had to wait for the genetic testing. As we waited for 3 weeks for the results, we tried to wrap our heads around it and we went ahead and treated her as if she had cf. Then the call came. It blew us away. Ellie has cultured staph before but not PA. One of the moms I talk too, her little girl cultured PA and they completely eradicated it the first time she cultured it!!! I am definitely a what-ifer and have definitely thought the worse. Allow yourself time to process, trust me, I still am processing it and my best advice is to find doctors that you completely trust. We have been blessed from the start with our doctors. Again we are here to help you anyway we can.

shimmereestar · Mar 25, 2008

Stay on this site, it has been such wonderful support for me. My Ellie was diagnosed at 2.5 months when she was failure to thrive. We were completely blown away, I had know idea I was a carrier. Like you, the only odd thing I thought was that she pooped a lot but I let it go because she was breastfed. In January we ended up in the hospital for a rash of all things. Later we found out it was malnutrition. We had two sweat tests but neither took so we had to wait for the genetic testing. As we waited for 3 weeks for the results, we tried to wrap our heads around it and we went ahead and treated her as if she had cf. Then the call came. It blew us away. Ellie has cultured staph before but not PA. One of the moms I talk too, her little girl cultured PA and they completely eradicated it the first time she cultured it!!! I am definitely a what-ifer and have definitely thought the worse. Allow yourself time to process, trust me, I still am processing it and my best advice is to find doctors that you completely trust. We have been blessed from the start with our doctors. Again we are here to help you anyway we can.

shimmereestar · Mar 25, 2008

Stay on this site, it has been such wonderful support for me. My Ellie was diagnosed at 2.5 months when she was failure to thrive. We were completely blown away, I had know idea I was a carrier. Like you, the only odd thing I thought was that she pooped a lot but I let it go because she was breastfed. In January we ended up in the hospital for a rash of all things. Later we found out it was malnutrition. We had two sweat tests but neither took so we had to wait for the genetic testing. As we waited for 3 weeks for the results, we tried to wrap our heads around it and we went ahead and treated her as if she had cf. Then the call came. It blew us away. Ellie has cultured staph before but not PA. One of the moms I talk too, her little girl cultured PA and they completely eradicated it the first time she cultured it!!! I am definitely a what-ifer and have definitely thought the worse. Allow yourself time to process, trust me, I still am processing it and my best advice is to find doctors that you completely trust. We have been blessed from the start with our doctors. Again we are here to help you anyway we can.

shimmereestar · Mar 25, 2008

Stay on this site, it has been such wonderful support for me. My Ellie was diagnosed at 2.5 months when she was failure to thrive. We were completely blown away, I had know idea I was a carrier. Like you, the only odd thing I thought was that she pooped a lot but I let it go because she was breastfed. In January we ended up in the hospital for a rash of all things. Later we found out it was malnutrition. We had two sweat tests but neither took so we had to wait for the genetic testing. As we waited for 3 weeks for the results, we tried to wrap our heads around it and we went ahead and treated her as if she had cf. Then the call came. It blew us away. Ellie has cultured staph before but not PA. One of the moms I talk too, her little girl cultured PA and they completely eradicated it the first time she cultured it!!! I am definitely a what-ifer and have definitely thought the worse. Allow yourself time to process, trust me, I still am processing it and my best advice is to find doctors that you completely trust. We have been blessed from the start with our doctors. Again we are here to help you anyway we can.

shimmereestar · Mar 25, 2008

Stay on this site, it has been such wonderful support for me. My Ellie was diagnosed at 2.5 months when she was failure to thrive. We were completely blown away, I had know idea I was a carrier. Like you, the only odd thing I thought was that she pooped a lot but I let it go because she was breastfed. In January we ended up in the hospital for a rash of all things. Later we found out it was malnutrition. We had two sweat tests but neither took so we had to wait for the genetic testing. As we waited for 3 weeks for the results, we tried to wrap our heads around it and we went ahead and treated her as if she had cf. Then the call came. It blew us away. Ellie has cultured staph before but not PA. One of the moms I talk too, her little girl cultured PA and they completely eradicated it the first time she cultured it!!! I am definitely a what-ifer and have definitely thought the worse. Allow yourself time to process, trust me, I still am processing it and my best advice is to find doctors that you completely trust. We have been blessed from the start with our doctors. Again we are here to help you anyway we can.

billsmom · Mar 25, 2008