Positive Test Result

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ctalbott0609

New member
Hey everyone. Yesterday went well. We went up to KC to Children's Mercy to get Paige's sweat test done. We got the results this morning, and she does have Cystic Fibrosis. The Ped. made an appointment at the CF clinic for us tomorrow at 10 AM.

To be honest, it all still feels so unreal. Tuesday night I couldn't sleep, so by the end of Wednesday, I had been up for 24 hours straight. I hardly slept last night as well, and I've even forgot to eat. I guess I'm just shell shocked. I feel like I'm being torn in so many different directions right now. How do I learn to balance the attention my son needs, with all the attention that my daughter HAS to have to remain healthy? Not to mention the housework, the bills, the errands, and everything else?

Further more, what happens now that we know she has it? The clinic called and said that the 1st appt should run about two hours, and I'll meet the nutritionist, the physical therapist, the NP, as well as Dr. Black who's taken her case, thankfully. She'll also have chest x-rays and labs and exams. I'm not sure what to really expect though.

Any help would really be so appreciated.
 
C

ctalbott0609

New member
Hey everyone. Yesterday went well. We went up to KC to Children's Mercy to get Paige's sweat test done. We got the results this morning, and she does have Cystic Fibrosis. The Ped. made an appointment at the CF clinic for us tomorrow at 10 AM.

To be honest, it all still feels so unreal. Tuesday night I couldn't sleep, so by the end of Wednesday, I had been up for 24 hours straight. I hardly slept last night as well, and I've even forgot to eat. I guess I'm just shell shocked. I feel like I'm being torn in so many different directions right now. How do I learn to balance the attention my son needs, with all the attention that my daughter HAS to have to remain healthy? Not to mention the housework, the bills, the errands, and everything else?

Further more, what happens now that we know she has it? The clinic called and said that the 1st appt should run about two hours, and I'll meet the nutritionist, the physical therapist, the NP, as well as Dr. Black who's taken her case, thankfully. She'll also have chest x-rays and labs and exams. I'm not sure what to really expect though.

Any help would really be so appreciated.
 
C

ctalbott0609

New member
Hey everyone. Yesterday went well. We went up to KC to Children's Mercy to get Paige's sweat test done. We got the results this morning, and she does have Cystic Fibrosis. The Ped. made an appointment at the CF clinic for us tomorrow at 10 AM.

To be honest, it all still feels so unreal. Tuesday night I couldn't sleep, so by the end of Wednesday, I had been up for 24 hours straight. I hardly slept last night as well, and I've even forgot to eat. I guess I'm just shell shocked. I feel like I'm being torn in so many different directions right now. How do I learn to balance the attention my son needs, with all the attention that my daughter HAS to have to remain healthy? Not to mention the housework, the bills, the errands, and everything else?

Further more, what happens now that we know she has it? The clinic called and said that the 1st appt should run about two hours, and I'll meet the nutritionist, the physical therapist, the NP, as well as Dr. Black who's taken her case, thankfully. She'll also have chest x-rays and labs and exams. I'm not sure what to really expect though.

Any help would really be so appreciated.
 
C

ctalbott0609

New member
Hey everyone. Yesterday went well. We went up to KC to Children's Mercy to get Paige's sweat test done. We got the results this morning, and she does have Cystic Fibrosis. The Ped. made an appointment at the CF clinic for us tomorrow at 10 AM.

To be honest, it all still feels so unreal. Tuesday night I couldn't sleep, so by the end of Wednesday, I had been up for 24 hours straight. I hardly slept last night as well, and I've even forgot to eat. I guess I'm just shell shocked. I feel like I'm being torn in so many different directions right now. How do I learn to balance the attention my son needs, with all the attention that my daughter HAS to have to remain healthy? Not to mention the housework, the bills, the errands, and everything else?

Further more, what happens now that we know she has it? The clinic called and said that the 1st appt should run about two hours, and I'll meet the nutritionist, the physical therapist, the NP, as well as Dr. Black who's taken her case, thankfully. She'll also have chest x-rays and labs and exams. I'm not sure what to really expect though.

Any help would really be so appreciated.
 
C

ctalbott0609

New member
Hey everyone. Yesterday went well. We went up to KC to Children's Mercy to get Paige's sweat test done. We got the results this morning, and she does have Cystic Fibrosis. The Ped. made an appointment at the CF clinic for us tomorrow at 10 AM.
<br />
<br />To be honest, it all still feels so unreal. Tuesday night I couldn't sleep, so by the end of Wednesday, I had been up for 24 hours straight. I hardly slept last night as well, and I've even forgot to eat. I guess I'm just shell shocked. I feel like I'm being torn in so many different directions right now. How do I learn to balance the attention my son needs, with all the attention that my daughter HAS to have to remain healthy? Not to mention the housework, the bills, the errands, and everything else?
<br />
<br />Further more, what happens now that we know she has it? The clinic called and said that the 1st appt should run about two hours, and I'll meet the nutritionist, the physical therapist, the NP, as well as Dr. Black who's taken her case, thankfully. She'll also have chest x-rays and labs and exams. I'm not sure what to really expect though.
<br />
<br />Any help would really be so appreciated.
 
T

TestifyToLove

New member
I have not been through a first appointment, since we adopted our son with CF long after his diagnosis. But, I didn't want your post to sit here without responses.

I'm sure you feel very overwhelmed, a bit scared and a lot lost right now. The most important thing to remember about CF is that diagnosis is actually a GOOD thing. With diagnosis comes aggressive and proactive treatment and the chance to help your child live their life to its very best instead of hitting the wall of lack of treatment any longer.

There are lots on here way more experienced than I am in telling you what to expect in that first appointment. You will get used to this new normal in time. Its not life as you imagined it. But, the world has not ended either, and your little girl has not died either. Its just a new adjustment of what normal means.
 
T

TestifyToLove

New member
I have not been through a first appointment, since we adopted our son with CF long after his diagnosis. But, I didn't want your post to sit here without responses.

I'm sure you feel very overwhelmed, a bit scared and a lot lost right now. The most important thing to remember about CF is that diagnosis is actually a GOOD thing. With diagnosis comes aggressive and proactive treatment and the chance to help your child live their life to its very best instead of hitting the wall of lack of treatment any longer.

There are lots on here way more experienced than I am in telling you what to expect in that first appointment. You will get used to this new normal in time. Its not life as you imagined it. But, the world has not ended either, and your little girl has not died either. Its just a new adjustment of what normal means.
 
T

TestifyToLove

New member
I have not been through a first appointment, since we adopted our son with CF long after his diagnosis. But, I didn't want your post to sit here without responses.

I'm sure you feel very overwhelmed, a bit scared and a lot lost right now. The most important thing to remember about CF is that diagnosis is actually a GOOD thing. With diagnosis comes aggressive and proactive treatment and the chance to help your child live their life to its very best instead of hitting the wall of lack of treatment any longer.

There are lots on here way more experienced than I am in telling you what to expect in that first appointment. You will get used to this new normal in time. Its not life as you imagined it. But, the world has not ended either, and your little girl has not died either. Its just a new adjustment of what normal means.
 
T

TestifyToLove

New member
I have not been through a first appointment, since we adopted our son with CF long after his diagnosis. But, I didn't want your post to sit here without responses.

I'm sure you feel very overwhelmed, a bit scared and a lot lost right now. The most important thing to remember about CF is that diagnosis is actually a GOOD thing. With diagnosis comes aggressive and proactive treatment and the chance to help your child live their life to its very best instead of hitting the wall of lack of treatment any longer.

There are lots on here way more experienced than I am in telling you what to expect in that first appointment. You will get used to this new normal in time. Its not life as you imagined it. But, the world has not ended either, and your little girl has not died either. Its just a new adjustment of what normal means.
 
T

TestifyToLove

New member
I have not been through a first appointment, since we adopted our son with CF long after his diagnosis. But, I didn't want your post to sit here without responses.
<br />
<br />I'm sure you feel very overwhelmed, a bit scared and a lot lost right now. The most important thing to remember about CF is that diagnosis is actually a GOOD thing. With diagnosis comes aggressive and proactive treatment and the chance to help your child live their life to its very best instead of hitting the wall of lack of treatment any longer.
<br />
<br />There are lots on here way more experienced than I am in telling you what to expect in that first appointment. You will get used to this new normal in time. Its not life as you imagined it. But, the world has not ended either, and your little girl has not died either. Its just a new adjustment of what normal means.
 
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crickit715

New member
Sorry about the test results...but welcome! The first couple months will be a whirlwind of shock, grief, denial and finally acceptance and happiness for the little person in your life! It will also take some time to get her on a "routine" and figure out the correct dosage of enzymes, meds, treatments, etc... so dont get discouraged when there are constant changes for the first couple months. I dont think we "leveled" out until she was about 7months old. I absolutley know how hard this is but our little ones are soooo worth it! Hang in there and you will have plenty of ears here to listen! God Bless. ricki
 
C

crickit715

New member
Sorry about the test results...but welcome! The first couple months will be a whirlwind of shock, grief, denial and finally acceptance and happiness for the little person in your life! It will also take some time to get her on a "routine" and figure out the correct dosage of enzymes, meds, treatments, etc... so dont get discouraged when there are constant changes for the first couple months. I dont think we "leveled" out until she was about 7months old. I absolutley know how hard this is but our little ones are soooo worth it! Hang in there and you will have plenty of ears here to listen! God Bless. ricki
 
C

crickit715

New member
Sorry about the test results...but welcome! The first couple months will be a whirlwind of shock, grief, denial and finally acceptance and happiness for the little person in your life! It will also take some time to get her on a "routine" and figure out the correct dosage of enzymes, meds, treatments, etc... so dont get discouraged when there are constant changes for the first couple months. I dont think we "leveled" out until she was about 7months old. I absolutley know how hard this is but our little ones are soooo worth it! Hang in there and you will have plenty of ears here to listen! God Bless. ricki
 
C

crickit715

New member
Sorry about the test results...but welcome! The first couple months will be a whirlwind of shock, grief, denial and finally acceptance and happiness for the little person in your life! It will also take some time to get her on a "routine" and figure out the correct dosage of enzymes, meds, treatments, etc... so dont get discouraged when there are constant changes for the first couple months. I dont think we "leveled" out until she was about 7months old. I absolutley know how hard this is but our little ones are soooo worth it! Hang in there and you will have plenty of ears here to listen! God Bless. ricki
 
C

crickit715

New member
Sorry about the test results...but welcome! The first couple months will be a whirlwind of shock, grief, denial and finally acceptance and happiness for the little person in your life! It will also take some time to get her on a "routine" and figure out the correct dosage of enzymes, meds, treatments, etc... so dont get discouraged when there are constant changes for the first couple months. I dont think we "leveled" out until she was about 7months old. I absolutley know how hard this is but our little ones are soooo worth it! Hang in there and you will have plenty of ears here to listen! God Bless. ricki
 
K

kitomd21

New member
Hi there - it's been a year since our daughter's diagnosis AND a year since she was discharged from the hospital due to respiratory issues. Thank God, she has been fine this past year. Her treatments have become part of the daily routine and her older brother receives plenty of love and affection!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's overwhelming at first, but you will be fine!! I am in no way trying to act as if there aren't time constraints or demands surrounding her treatments, however, we're doing well. You can PM if you have other questions...you'll find your routine soon....
 
K

kitomd21

New member
Hi there - it's been a year since our daughter's diagnosis AND a year since she was discharged from the hospital due to respiratory issues. Thank God, she has been fine this past year. Her treatments have become part of the daily routine and her older brother receives plenty of love and affection!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's overwhelming at first, but you will be fine!! I am in no way trying to act as if there aren't time constraints or demands surrounding her treatments, however, we're doing well. You can PM if you have other questions...you'll find your routine soon....
 
K

kitomd21

New member
Hi there - it's been a year since our daughter's diagnosis AND a year since she was discharged from the hospital due to respiratory issues. Thank God, she has been fine this past year. Her treatments have become part of the daily routine and her older brother receives plenty of love and affection!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's overwhelming at first, but you will be fine!! I am in no way trying to act as if there aren't time constraints or demands surrounding her treatments, however, we're doing well. You can PM if you have other questions...you'll find your routine soon....
 
K

kitomd21

New member
Hi there - it's been a year since our daughter's diagnosis AND a year since she was discharged from the hospital due to respiratory issues. Thank God, she has been fine this past year. Her treatments have become part of the daily routine and her older brother receives plenty of love and affection!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's overwhelming at first, but you will be fine!! I am in no way trying to act as if there aren't time constraints or demands surrounding her treatments, however, we're doing well. You can PM if you have other questions...you'll find your routine soon....
 
K

kitomd21

New member
Hi there - it's been a year since our daughter's diagnosis AND a year since she was discharged from the hospital due to respiratory issues. Thank God, she has been fine this past year. Her treatments have become part of the daily routine and her older brother receives plenty of love and affection!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's overwhelming at first, but you will be fine!! I am in no way trying to act as if there aren't time constraints or demands surrounding her treatments, however, we're doing well. You can PM if you have other questions...you'll find your routine soon....
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