Back from Grand Rapids and confused as ever.

holmfamily1992 · Jul 24, 2008

Hey there everyone,

We got back home around 3 this afternoon. It was a long trip thats for sure.

First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.

8:00am: Sweat test started (all 7 children this time)

11:00am: finally got them all done and back to the room for lunch

12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.

1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.

Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.

So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.

So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.

All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??

I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.

So what do all of you think?? I need input here. Does this happen a lot??

Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.

Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina

holmfamily1992 · Jul 24, 2008

Hey there everyone,

We got back home around 3 this afternoon. It was a long trip thats for sure.

First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.

8:00am: Sweat test started (all 7 children this time)

11:00am: finally got them all done and back to the room for lunch

12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.

1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.

Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.

So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.

So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.

All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??

I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.

So what do all of you think?? I need input here. Does this happen a lot??

Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.

Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina

holmfamily1992 · Jul 24, 2008

Hey there everyone,

We got back home around 3 this afternoon. It was a long trip thats for sure.

First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.

8:00am: Sweat test started (all 7 children this time)

11:00am: finally got them all done and back to the room for lunch

12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.

1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.

Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.

So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.

So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.

All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??

I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.

So what do all of you think?? I need input here. Does this happen a lot??

Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.

Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina

holmfamily1992 · Jul 24, 2008

Hey there everyone,

We got back home around 3 this afternoon. It was a long trip thats for sure.

First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.

8:00am: Sweat test started (all 7 children this time)

11:00am: finally got them all done and back to the room for lunch

12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.

1:30pm: Finally saw a Doctor
She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
Oh, by the way Jen, the new doctor is very percise. She is also very nice.
So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.

Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.

So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.

So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.

All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??

I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.

So what do all of you think?? I need input here. Does this happen a lot??

Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.

Sorry so long, I have to go to bed now.
Hope to hear from everyone,
Tina

holmfamily1992 · Jul 24, 2008

Hey there everyone,
 
 We got back home around 3 this afternoon. It was a long trip thats for sure.
 
 First, the last time I spoke with our social worker at our clinic, she told me that she had spoke to the manager at the hospitality house and he said he would move in 4 roll away beds for all of us to sleep on. (concidering the floors are cement) We arived around 9:00pm and the receptionist proceeded to tell me that the manager has no idea what he was talking about. They couldnt put 4 extra beds in there so they brought in 2. Now that left 3 of my children with no beds.
 
 8:00am: Sweat test started (all 7 children this time)
 
 11:00am: finally got them all done and back to the room for lunch
 
 12:00pm: Meeting with our CF Doctor and treatment discussion for both kids.
 
 1:30pm: Finally saw a Doctor
 She then proceeded to apologize for our test results. Every single one came back Negative. Even the 2 that were Postive to begin with. And not just a little postive but positive. Enough to begin treatment without the genetic results.
 Oh, by the way Jen, the new doctor is very percise. She is also very nice.
 So about 2:00 the fire alarm went off in the building and we all had to go outside. NO FIRE THANK GOODNESS!! But I didnt get see our actual Doctor till almost 3:00. I asked him how the sweat test ended being negative. He proceeded to tell me that normally once your positive you are always positive and the same with negative. I do remember reading this in our CF book and all the other resources I got my hands on. So how is this possible?? He told me that it could have been something to do with their Hydration that day. But when I think back on the day before, they drank so much water it was pathetic. The hospitality house we stayed in had a cool ice and water machine, so of course they used it all night long.
 
 Both Doctors told us that our situation was very weird and ordered Chest Xrays for all the kids. And also the full panel genetic testing.
 
 So this morning I took my 3 children into the lab for their blood work and the lab tech asked me why we werent doing sweat test again. He said when a test goes from positive to a negative a third test is normally done. He said something went must have went wrong.
 
 So my question is, Is there anyone our there that had a false positive or a false negative? And if the sweat test is suppose to be so accurate how does this kind of thing happen?? I have been told that nothing can alter the results of a sweat test. That is why its concidered so accurate.
 
 All our blood work was sent to Mayo this time. Im not sure why they switched from Ambry. Now its just another 4 week waiting game.
 
 At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations?? I guess Im just searching for answers. Why cant this disease be cut and dry??
 
 I am calling Mayo tomorrow and asking them to send me the results as soon as they are ready. It took our clinic 5 months after they received the results to contact me with Dylans results. At least if I have them I can call everyday to find out what they want to do. I have to, I cant go though what I did with Dylan.
 
 So what do all of you think?? I need input here. Does this happen a lot??
 
 Heavy hearted once again, but I am VERY EXCITED about something and I want to share it with all of you.
 In this whole proccess with Dylan, I realized that people in my area are not very educated about CF. SO, Doug and I started brain storming on what we can do to change that. We contacted the Foundation and they are willing to send a couple of people up here to do a conference and open it to all that are interested. Also, I signed up to be a team leader for the Great STrides walk in Big Rapids,MI on the 21st of September. We are hosting the very first 3 on 3 basketball tourmament set for Labor Day weekend. Our Superintendent is letting us use the school gyms for free and is willing to help out with whatever we need. Also, 2 news papers are interviewing us tomorrow and they are going to run our story!!!!! That will get the word out! We want to raise around $5000 to take with us to the Great Strides walk. Crazy I know but we can do it. I know we can.
 
 Sorry so long, I have to go to bed now.
 Hope to hear from everyone,
 Tina

Chilemom · Jul 25, 2008

Tina
-i have heard about false positive and false negative. Actually my doctor first thoaught that my daughter sweat test was a false positive.... unfortunatly it was correct.
-My genetic full test also late for 6 weeks, and more.
-For the youngest child i will sugest you to make sure he eat a lot of fruit that has calories and dont need enzymes, and prepare him food with coco oil ( its my SOS in case my daughter lose weight). I can tell you that when my daughter was dx she was percentil 5 or less (9 month ago) now she is 75, that means that your son as soon he is dx (if he has cf)he will be able to be a big man.

And yes the best thing to do is to fight in a good way against cf, i am sure that you will get more than 5.ooo

always thinking in the Holms family
fran

Chilemom · Jul 25, 2008

Tina
-i have heard about false positive and false negative. Actually my doctor first thoaught that my daughter sweat test was a false positive.... unfortunatly it was correct.
-My genetic full test also late for 6 weeks, and more.
-For the youngest child i will sugest you to make sure he eat a lot of fruit that has calories and dont need enzymes, and prepare him food with coco oil ( its my SOS in case my daughter lose weight). I can tell you that when my daughter was dx she was percentil 5 or less (9 month ago) now she is 75, that means that your son as soon he is dx (if he has cf)he will be able to be a big man.

And yes the best thing to do is to fight in a good way against cf, i am sure that you will get more than 5.ooo

always thinking in the Holms family
fran

Chilemom · Jul 25, 2008

Tina
-i have heard about false positive and false negative. Actually my doctor first thoaught that my daughter sweat test was a false positive.... unfortunatly it was correct.
-My genetic full test also late for 6 weeks, and more.
-For the youngest child i will sugest you to make sure he eat a lot of fruit that has calories and dont need enzymes, and prepare him food with coco oil ( its my SOS in case my daughter lose weight). I can tell you that when my daughter was dx she was percentil 5 or less (9 month ago) now she is 75, that means that your son as soon he is dx (if he has cf)he will be able to be a big man.

And yes the best thing to do is to fight in a good way against cf, i am sure that you will get more than 5.ooo

always thinking in the Holms family
fran

Chilemom · Jul 25, 2008

Tina
-i have heard about false positive and false negative. Actually my doctor first thoaught that my daughter sweat test was a false positive.... unfortunatly it was correct.
-My genetic full test also late for 6 weeks, and more.
-For the youngest child i will sugest you to make sure he eat a lot of fruit that has calories and dont need enzymes, and prepare him food with coco oil ( its my SOS in case my daughter lose weight). I can tell you that when my daughter was dx she was percentil 5 or less (9 month ago) now she is 75, that means that your son as soon he is dx (if he has cf)he will be able to be a big man.

And yes the best thing to do is to fight in a good way against cf, i am sure that you will get more than 5.ooo

always thinking in the Holms family
fran

Chilemom · Jul 25, 2008

Tina
 -i have heard about false positive and false negative. Actually my doctor first thoaught that my daughter sweat test was a false positive.... unfortunatly it was correct.
 -My genetic full test also late for 6 weeks, and more.
 -For the youngest child i will sugest you to make sure he eat a lot of fruit that has calories and dont need enzymes, and prepare him food with coco oil ( its my SOS in case my daughter lose weight). I can tell you that when my daughter was dx she was percentil 5 or less (9 month ago) now she is 75, that means that your son as soon he is dx (if he has cf)he will be able to be a big man.
 
 And yes the best thing to do is to fight in a good way against cf, i am sure that you will get more than 5.ooo
 
 always thinking in the Holms family
 fran

Juliet · Jul 25, 2008

Hi Tina, What an exhausting day. I hope you get answers back soon. As for the sweat tests, I have a hard time believing them. When I was a teenager in the mid 1980s I had a 53. A few years ago I tested a 40 and a 43. If anything my CF has progressed in the 25+ intervening years. Ambry genetics results led to the CF diagnosis. I'd personally be much more inclined to believe the genetic test results than the sweat tests. Good Luck and congratulations about the conference and your Great Strides team! ~Juliet

Juliet · Jul 25, 2008

Hi Tina, What an exhausting day. I hope you get answers back soon. As for the sweat tests, I have a hard time believing them. When I was a teenager in the mid 1980s I had a 53. A few years ago I tested a 40 and a 43. If anything my CF has progressed in the 25+ intervening years. Ambry genetics results led to the CF diagnosis. I'd personally be much more inclined to believe the genetic test results than the sweat tests. Good Luck and congratulations about the conference and your Great Strides team! ~Juliet

Juliet · Jul 25, 2008

Hi Tina, What an exhausting day. I hope you get answers back soon. As for the sweat tests, I have a hard time believing them. When I was a teenager in the mid 1980s I had a 53. A few years ago I tested a 40 and a 43. If anything my CF has progressed in the 25+ intervening years. Ambry genetics results led to the CF diagnosis. I'd personally be much more inclined to believe the genetic test results than the sweat tests. Good Luck and congratulations about the conference and your Great Strides team! ~Juliet

Juliet · Jul 25, 2008

Hi Tina, What an exhausting day. I hope you get answers back soon. As for the sweat tests, I have a hard time believing them. When I was a teenager in the mid 1980s I had a 53. A few years ago I tested a 40 and a 43. If anything my CF has progressed in the 25+ intervening years. Ambry genetics results led to the CF diagnosis. I'd personally be much more inclined to believe the genetic test results than the sweat tests. Good Luck and congratulations about the conference and your Great Strides team! ~Juliet

Juliet · Jul 25, 2008

Hi Tina, What an exhausting day. I hope you get answers back soon. As for the sweat tests, I have a hard time believing them. When I was a teenager in the mid 1980s I had a 53. A few years ago I tested a 40 and a 43. If anything my CF has progressed in the 25+ intervening years. Ambry genetics results led to the CF diagnosis. I'd personally be much more inclined to believe the genetic test results than the sweat tests. Good Luck and congratulations about the conference and your Great Strides team! ~Juliet

jdprecious · Jul 25, 2008

Yay, an update from Tina! I think of you guys so often! I was anxious to know how things were progressing with all the kids... Congats on the fundraising!!! It sounds like a blast!! And thank goodness they just went ahead and panelled everyone. Sweats can vary as can symptoms, Id rather know for sure than just a "well it looks like... " It won't be too long now and everyone can take the appropriate actions going forward. Just be on their arses about the results... I'd call everyday just to be obnoxious, jk... haha!

Sounds like things are coming together, even though it has been a bumpy ride to diagnosis, it almost always is! I told our pediatrician for a year, switched to a family doc and told him for six months. Then finally after almost two years of me saying to our doctors, hey I think she has CF. Take a look at what I found on the internet about it. Failure to thrive, check, chronic cough and runny nose, check, greasy and foul stools, check, vomiting mucus, check. I mean come on?!? But, that is just how it is sometimes. As soon as she was taking the appropriate medications, a complete 180. So, the sooner you get the kiddos on their meds and doing better, things will go a lot more smoothly! You are almost there!!!!

And we are always praying for you guys!!! I don't know why your family sticks out to me so much... maybe because there are just so many of you!! haha... keep smiling!

Warmest wishes,
Jess and fam

jdprecious · Jul 25, 2008

Yay, an update from Tina! I think of you guys so often! I was anxious to know how things were progressing with all the kids... Congats on the fundraising!!! It sounds like a blast!! And thank goodness they just went ahead and panelled everyone. Sweats can vary as can symptoms, Id rather know for sure than just a "well it looks like... " It won't be too long now and everyone can take the appropriate actions going forward. Just be on their arses about the results... I'd call everyday just to be obnoxious, jk... haha!

Sounds like things are coming together, even though it has been a bumpy ride to diagnosis, it almost always is! I told our pediatrician for a year, switched to a family doc and told him for six months. Then finally after almost two years of me saying to our doctors, hey I think she has CF. Take a look at what I found on the internet about it. Failure to thrive, check, chronic cough and runny nose, check, greasy and foul stools, check, vomiting mucus, check. I mean come on?!? But, that is just how it is sometimes. As soon as she was taking the appropriate medications, a complete 180. So, the sooner you get the kiddos on their meds and doing better, things will go a lot more smoothly! You are almost there!!!!

And we are always praying for you guys!!! I don't know why your family sticks out to me so much... maybe because there are just so many of you!! haha... keep smiling!

Warmest wishes,
Jess and fam

jdprecious · Jul 25, 2008

Yay, an update from Tina! I think of you guys so often! I was anxious to know how things were progressing with all the kids... Congats on the fundraising!!! It sounds like a blast!! And thank goodness they just went ahead and panelled everyone. Sweats can vary as can symptoms, Id rather know for sure than just a "well it looks like... " It won't be too long now and everyone can take the appropriate actions going forward. Just be on their arses about the results... I'd call everyday just to be obnoxious, jk... haha!

Sounds like things are coming together, even though it has been a bumpy ride to diagnosis, it almost always is! I told our pediatrician for a year, switched to a family doc and told him for six months. Then finally after almost two years of me saying to our doctors, hey I think she has CF. Take a look at what I found on the internet about it. Failure to thrive, check, chronic cough and runny nose, check, greasy and foul stools, check, vomiting mucus, check. I mean come on?!? But, that is just how it is sometimes. As soon as she was taking the appropriate medications, a complete 180. So, the sooner you get the kiddos on their meds and doing better, things will go a lot more smoothly! You are almost there!!!!

And we are always praying for you guys!!! I don't know why your family sticks out to me so much... maybe because there are just so many of you!! haha... keep smiling!

Warmest wishes,
Jess and fam

jdprecious · Jul 25, 2008

Yay, an update from Tina! I think of you guys so often! I was anxious to know how things were progressing with all the kids... Congats on the fundraising!!! It sounds like a blast!! And thank goodness they just went ahead and panelled everyone. Sweats can vary as can symptoms, Id rather know for sure than just a "well it looks like... " It won't be too long now and everyone can take the appropriate actions going forward. Just be on their arses about the results... I'd call everyday just to be obnoxious, jk... haha!

Sounds like things are coming together, even though it has been a bumpy ride to diagnosis, it almost always is! I told our pediatrician for a year, switched to a family doc and told him for six months. Then finally after almost two years of me saying to our doctors, hey I think she has CF. Take a look at what I found on the internet about it. Failure to thrive, check, chronic cough and runny nose, check, greasy and foul stools, check, vomiting mucus, check. I mean come on?!? But, that is just how it is sometimes. As soon as she was taking the appropriate medications, a complete 180. So, the sooner you get the kiddos on their meds and doing better, things will go a lot more smoothly! You are almost there!!!!

And we are always praying for you guys!!! I don't know why your family sticks out to me so much... maybe because there are just so many of you!! haha... keep smiling!

Warmest wishes,
Jess and fam

jdprecious · Jul 25, 2008

Yay, an update from Tina! I think of you guys so often! I was anxious to know how things were progressing with all the kids... Congats on the fundraising!!! It sounds like a blast!! And thank goodness they just went ahead and panelled everyone. Sweats can vary as can symptoms, Id rather know for sure than just a "well it looks like... " It won't be too long now and everyone can take the appropriate actions going forward. Just be on their arses about the results... I'd call everyday just to be obnoxious, jk... haha!
 
 Sounds like things are coming together, even though it has been a bumpy ride to diagnosis, it almost always is! I told our pediatrician for a year, switched to a family doc and told him for six months. Then finally after almost two years of me saying to our doctors, hey I think she has CF. Take a look at what I found on the internet about it. Failure to thrive, check, chronic cough and runny nose, check, greasy and foul stools, check, vomiting mucus, check. I mean come on?!? But, that is just how it is sometimes. As soon as she was taking the appropriate medications, a complete 180. So, the sooner you get the kiddos on their meds and doing better, things will go a lot more smoothly! You are almost there!!!!
 
 And we are always praying for you guys!!! I don't know why your family sticks out to me so much... maybe because there are just so many of you!! haha... keep smiling!
 
 Warmest wishes,
 Jess and fam

Back from Grand Rapids and confused as ever.

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