Positive Test Result

izemmom

New member
Oh my, reading your post brings back so many menories. Three and a half years ago I was where you are...mom to a 3 year old and a newborn with CF. I vividly remember the forgetting to eat and not sleeping, along with the worry, fear, anger...it really is a rollercoaster, like a previous poster said.

There really is no way to tell you what to expect, and to say "It will be OK" doesn't seem to do justice to the road you face. Just know that you are not alone in this, and you've found a very valuable resource here.

In time you'll decide how you'll cope and learn best. For me, the first few weeks were spent on the computer, finding out everything I could. I still cope best that way when "the next big thing" happens (because it seems like there will always be a next big thing...even when some of them are really small."

As far as learning to balance everything, try to remind yourself that you've never had two children before, so, you'd be learning a new routine and "balance" even without the CF. Your little guy doesn't know any different, either, and when he's a big six year old like my oldest is now, he won't remember anything about this time except how much he loved his little sister. Just do your best to answer his questions as they come and continue to love him just like you did two months ago. He'll be your best helper!

Things will fall into place. It WILL take time. But you'll get back to "normal" someday.

As for the first appointment, you've got a lot of good advice from other posters. The notebook is essential. Before your appointment, write down EVERY question that pops into your head. You'll likely be overwhelmed and emotional, and it can be very calming to see your questions on paper. Of course you'll want to write down new info, too.

Meeting the team will go a long way toward making you feel comfortable and more in control, too. It's so nice to know that you have good caregivers.

In some ways your appointment won't be too different from a well baby checkup at the pedictrician. They'll weigh her, measure her listen to her chest and probably will do a blood draw if that hasn't been done already (for genetic testing). And yes, they'll teach you how to do chest PT and adminster any inhaled meds that they want her on right away. Don't worry, this all sounds scarier than it is! YOu can do it!

Please check back in and let us all know how it goes. This is great place to come for support and to get questions answered. Welcome!
 

izemmom

New member
Oh my, reading your post brings back so many menories. Three and a half years ago I was where you are...mom to a 3 year old and a newborn with CF. I vividly remember the forgetting to eat and not sleeping, along with the worry, fear, anger...it really is a rollercoaster, like a previous poster said.

There really is no way to tell you what to expect, and to say "It will be OK" doesn't seem to do justice to the road you face. Just know that you are not alone in this, and you've found a very valuable resource here.

In time you'll decide how you'll cope and learn best. For me, the first few weeks were spent on the computer, finding out everything I could. I still cope best that way when "the next big thing" happens (because it seems like there will always be a next big thing...even when some of them are really small."

As far as learning to balance everything, try to remind yourself that you've never had two children before, so, you'd be learning a new routine and "balance" even without the CF. Your little guy doesn't know any different, either, and when he's a big six year old like my oldest is now, he won't remember anything about this time except how much he loved his little sister. Just do your best to answer his questions as they come and continue to love him just like you did two months ago. He'll be your best helper!

Things will fall into place. It WILL take time. But you'll get back to "normal" someday.

As for the first appointment, you've got a lot of good advice from other posters. The notebook is essential. Before your appointment, write down EVERY question that pops into your head. You'll likely be overwhelmed and emotional, and it can be very calming to see your questions on paper. Of course you'll want to write down new info, too.

Meeting the team will go a long way toward making you feel comfortable and more in control, too. It's so nice to know that you have good caregivers.

In some ways your appointment won't be too different from a well baby checkup at the pedictrician. They'll weigh her, measure her listen to her chest and probably will do a blood draw if that hasn't been done already (for genetic testing). And yes, they'll teach you how to do chest PT and adminster any inhaled meds that they want her on right away. Don't worry, this all sounds scarier than it is! YOu can do it!

Please check back in and let us all know how it goes. This is great place to come for support and to get questions answered. Welcome!
 

izemmom

New member
Oh my, reading your post brings back so many menories. Three and a half years ago I was where you are...mom to a 3 year old and a newborn with CF. I vividly remember the forgetting to eat and not sleeping, along with the worry, fear, anger...it really is a rollercoaster, like a previous poster said.

There really is no way to tell you what to expect, and to say "It will be OK" doesn't seem to do justice to the road you face. Just know that you are not alone in this, and you've found a very valuable resource here.

In time you'll decide how you'll cope and learn best. For me, the first few weeks were spent on the computer, finding out everything I could. I still cope best that way when "the next big thing" happens (because it seems like there will always be a next big thing...even when some of them are really small."

As far as learning to balance everything, try to remind yourself that you've never had two children before, so, you'd be learning a new routine and "balance" even without the CF. Your little guy doesn't know any different, either, and when he's a big six year old like my oldest is now, he won't remember anything about this time except how much he loved his little sister. Just do your best to answer his questions as they come and continue to love him just like you did two months ago. He'll be your best helper!

Things will fall into place. It WILL take time. But you'll get back to "normal" someday.

As for the first appointment, you've got a lot of good advice from other posters. The notebook is essential. Before your appointment, write down EVERY question that pops into your head. You'll likely be overwhelmed and emotional, and it can be very calming to see your questions on paper. Of course you'll want to write down new info, too.

Meeting the team will go a long way toward making you feel comfortable and more in control, too. It's so nice to know that you have good caregivers.

In some ways your appointment won't be too different from a well baby checkup at the pedictrician. They'll weigh her, measure her listen to her chest and probably will do a blood draw if that hasn't been done already (for genetic testing). And yes, they'll teach you how to do chest PT and adminster any inhaled meds that they want her on right away. Don't worry, this all sounds scarier than it is! YOu can do it!

Please check back in and let us all know how it goes. This is great place to come for support and to get questions answered. Welcome!
 

izemmom

New member
Oh my, reading your post brings back so many menories. Three and a half years ago I was where you are...mom to a 3 year old and a newborn with CF. I vividly remember the forgetting to eat and not sleeping, along with the worry, fear, anger...it really is a rollercoaster, like a previous poster said.

There really is no way to tell you what to expect, and to say "It will be OK" doesn't seem to do justice to the road you face. Just know that you are not alone in this, and you've found a very valuable resource here.

In time you'll decide how you'll cope and learn best. For me, the first few weeks were spent on the computer, finding out everything I could. I still cope best that way when "the next big thing" happens (because it seems like there will always be a next big thing...even when some of them are really small."

As far as learning to balance everything, try to remind yourself that you've never had two children before, so, you'd be learning a new routine and "balance" even without the CF. Your little guy doesn't know any different, either, and when he's a big six year old like my oldest is now, he won't remember anything about this time except how much he loved his little sister. Just do your best to answer his questions as they come and continue to love him just like you did two months ago. He'll be your best helper!

Things will fall into place. It WILL take time. But you'll get back to "normal" someday.

As for the first appointment, you've got a lot of good advice from other posters. The notebook is essential. Before your appointment, write down EVERY question that pops into your head. You'll likely be overwhelmed and emotional, and it can be very calming to see your questions on paper. Of course you'll want to write down new info, too.

Meeting the team will go a long way toward making you feel comfortable and more in control, too. It's so nice to know that you have good caregivers.

In some ways your appointment won't be too different from a well baby checkup at the pedictrician. They'll weigh her, measure her listen to her chest and probably will do a blood draw if that hasn't been done already (for genetic testing). And yes, they'll teach you how to do chest PT and adminster any inhaled meds that they want her on right away. Don't worry, this all sounds scarier than it is! YOu can do it!

Please check back in and let us all know how it goes. This is great place to come for support and to get questions answered. Welcome!
 

izemmom

New member
Oh my, reading your post brings back so many menories. Three and a half years ago I was where you are...mom to a 3 year old and a newborn with CF. I vividly remember the forgetting to eat and not sleeping, along with the worry, fear, anger...it really is a rollercoaster, like a previous poster said.
<br />
<br />There really is no way to tell you what to expect, and to say "It will be OK" doesn't seem to do justice to the road you face. Just know that you are not alone in this, and you've found a very valuable resource here.
<br />
<br />In time you'll decide how you'll cope and learn best. For me, the first few weeks were spent on the computer, finding out everything I could. I still cope best that way when "the next big thing" happens (because it seems like there will always be a next big thing...even when some of them are really small."
<br />
<br />As far as learning to balance everything, try to remind yourself that you've never had two children before, so, you'd be learning a new routine and "balance" even without the CF. Your little guy doesn't know any different, either, and when he's a big six year old like my oldest is now, he won't remember anything about this time except how much he loved his little sister. Just do your best to answer his questions as they come and continue to love him just like you did two months ago. He'll be your best helper!
<br />
<br />Things will fall into place. It WILL take time. But you'll get back to "normal" someday.
<br />
<br />As for the first appointment, you've got a lot of good advice from other posters. The notebook is essential. Before your appointment, write down EVERY question that pops into your head. You'll likely be overwhelmed and emotional, and it can be very calming to see your questions on paper. Of course you'll want to write down new info, too.
<br />
<br />Meeting the team will go a long way toward making you feel comfortable and more in control, too. It's so nice to know that you have good caregivers.
<br />
<br />In some ways your appointment won't be too different from a well baby checkup at the pedictrician. They'll weigh her, measure her listen to her chest and probably will do a blood draw if that hasn't been done already (for genetic testing). And yes, they'll teach you how to do chest PT and adminster any inhaled meds that they want her on right away. Don't worry, this all sounds scarier than it is! YOu can do it!
<br />
<br />Please check back in and let us all know how it goes. This is great place to come for support and to get questions answered. Welcome!
 

RebekahsMom

New member
Hi,

I'm sorry to hear the results, but now you know. Yes, the first 2 months or so will be a whirlwind learning experience, and you have to remember to eat. I lost at least 10 lbs in the first 2 weeks after Bek was diagnosed and I really didn't have it to lose. Our appointment is at 9:45 this morning so we will probably see you there. Hopefully we'll have the chance to talk for a few minutes. By the way, you will also be getting a business card from everyone you talk to today. Make notes as to which card goes with who and what they do and when you need to call them for help.

Time for us to head out.
 

RebekahsMom

New member
Hi,

I'm sorry to hear the results, but now you know. Yes, the first 2 months or so will be a whirlwind learning experience, and you have to remember to eat. I lost at least 10 lbs in the first 2 weeks after Bek was diagnosed and I really didn't have it to lose. Our appointment is at 9:45 this morning so we will probably see you there. Hopefully we'll have the chance to talk for a few minutes. By the way, you will also be getting a business card from everyone you talk to today. Make notes as to which card goes with who and what they do and when you need to call them for help.

Time for us to head out.
 

RebekahsMom

New member
Hi,

I'm sorry to hear the results, but now you know. Yes, the first 2 months or so will be a whirlwind learning experience, and you have to remember to eat. I lost at least 10 lbs in the first 2 weeks after Bek was diagnosed and I really didn't have it to lose. Our appointment is at 9:45 this morning so we will probably see you there. Hopefully we'll have the chance to talk for a few minutes. By the way, you will also be getting a business card from everyone you talk to today. Make notes as to which card goes with who and what they do and when you need to call them for help.

Time for us to head out.
 

RebekahsMom

New member
Hi,

I'm sorry to hear the results, but now you know. Yes, the first 2 months or so will be a whirlwind learning experience, and you have to remember to eat. I lost at least 10 lbs in the first 2 weeks after Bek was diagnosed and I really didn't have it to lose. Our appointment is at 9:45 this morning so we will probably see you there. Hopefully we'll have the chance to talk for a few minutes. By the way, you will also be getting a business card from everyone you talk to today. Make notes as to which card goes with who and what they do and when you need to call them for help.

Time for us to head out.
 

RebekahsMom

New member
Hi,
<br />
<br />I'm sorry to hear the results, but now you know. Yes, the first 2 months or so will be a whirlwind learning experience, and you have to remember to eat. I lost at least 10 lbs in the first 2 weeks after Bek was diagnosed and I really didn't have it to lose. Our appointment is at 9:45 this morning so we will probably see you there. Hopefully we'll have the chance to talk for a few minutes. By the way, you will also be getting a business card from everyone you talk to today. Make notes as to which card goes with who and what they do and when you need to call them for help.
<br />
<br />Time for us to head out.
 

RebekahsMom

New member
I met Chelsea and Paige this morning! Such a beautiful little baby!! Sucking on her bottle and not a clue as to what she was getting ready to go through. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Chelsea,

How did the visit go this morning? Overwhelmed? We know just where you are, dear. Any time you need to talk, please get hold of me and I will give you a call (my long distance is free). If you ever need to stay in KC and there is no family here for you to stay with, you are more than welcome to stay with us. My husband already agreed.
Let us know how things went today. I will be out of town til Sunday afternoon, so I will check back in then.
 

RebekahsMom

New member
I met Chelsea and Paige this morning! Such a beautiful little baby!! Sucking on her bottle and not a clue as to what she was getting ready to go through. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Chelsea,

How did the visit go this morning? Overwhelmed? We know just where you are, dear. Any time you need to talk, please get hold of me and I will give you a call (my long distance is free). If you ever need to stay in KC and there is no family here for you to stay with, you are more than welcome to stay with us. My husband already agreed.
Let us know how things went today. I will be out of town til Sunday afternoon, so I will check back in then.
 

RebekahsMom

New member
I met Chelsea and Paige this morning! Such a beautiful little baby!! Sucking on her bottle and not a clue as to what she was getting ready to go through. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Chelsea,

How did the visit go this morning? Overwhelmed? We know just where you are, dear. Any time you need to talk, please get hold of me and I will give you a call (my long distance is free). If you ever need to stay in KC and there is no family here for you to stay with, you are more than welcome to stay with us. My husband already agreed.
Let us know how things went today. I will be out of town til Sunday afternoon, so I will check back in then.
 

RebekahsMom

New member
I met Chelsea and Paige this morning! Such a beautiful little baby!! Sucking on her bottle and not a clue as to what she was getting ready to go through. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Chelsea,

How did the visit go this morning? Overwhelmed? We know just where you are, dear. Any time you need to talk, please get hold of me and I will give you a call (my long distance is free). If you ever need to stay in KC and there is no family here for you to stay with, you are more than welcome to stay with us. My husband already agreed.
Let us know how things went today. I will be out of town til Sunday afternoon, so I will check back in then.
 

RebekahsMom

New member
I met Chelsea and Paige this morning! Such a beautiful little baby!! Sucking on her bottle and not a clue as to what she was getting ready to go through. <img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br />Chelsea,
<br />
<br />How did the visit go this morning? Overwhelmed? We know just where you are, dear. Any time you need to talk, please get hold of me and I will give you a call (my long distance is free). If you ever need to stay in KC and there is no family here for you to stay with, you are more than welcome to stay with us. My husband already agreed.
<br />Let us know how things went today. I will be out of town til Sunday afternoon, so I will check back in then.
 

ctalbott0609

New member
Sorry it's taken so long to respond, I've only had very limited internet access up until now. Thank you all for the advice, and I wish I would've been able to read about the notebook before my appt, because sure enough, I was overwhelmed, and tired, and forgot quite a bit of stuff. It all worked out though! Anyways, thanks again!
 

ctalbott0609

New member
Sorry it's taken so long to respond, I've only had very limited internet access up until now. Thank you all for the advice, and I wish I would've been able to read about the notebook before my appt, because sure enough, I was overwhelmed, and tired, and forgot quite a bit of stuff. It all worked out though! Anyways, thanks again!
 

ctalbott0609

New member
Sorry it's taken so long to respond, I've only had very limited internet access up until now. Thank you all for the advice, and I wish I would've been able to read about the notebook before my appt, because sure enough, I was overwhelmed, and tired, and forgot quite a bit of stuff. It all worked out though! Anyways, thanks again!
 

ctalbott0609

New member
Sorry it's taken so long to respond, I've only had very limited internet access up until now. Thank you all for the advice, and I wish I would've been able to read about the notebook before my appt, because sure enough, I was overwhelmed, and tired, and forgot quite a bit of stuff. It all worked out though! Anyways, thanks again!
 

ctalbott0609

New member
Sorry it's taken so long to respond, I've only had very limited internet access up until now. Thank you all for the advice, and I wish I would've been able to read about the notebook before my appt, because sure enough, I was overwhelmed, and tired, and forgot quite a bit of stuff. It all worked out though! Anyways, thanks again!
 
Top