Children understanding the seriosness

holmfamily1992

New member
Hey there everyone,

We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment on July 1st I plan on raising holy hell.

2nd, Dylan is having a real hard time understanding why his meds are so important. He knows he feels good right now and has for awhile now. So he gives us a lot of attitude when we do his treatments in the morning. Also, we started him on the scanishake 2 twice daily to boost his weight and I caught him dumping it out. I mix it with chocolate suryp so it takes pretty good so I know it doesnt taste bad. And when I caught him dumping it he lied and said he drank it. He wants to play popwarner football so bad this August and if he doenst gain 5 pounds he cant. We have tried to explain this to him in many different ways but it doesnt seem to get through. He is starting with the attitude that "I cant do that because Im sick". We are the type of family that regardless if you are sick or not there are no limitations. You can do whatever you want when you want to do it. (within reason of course) I am not sure where this is coming from. I plan on speeking witht he phycologist when we are at his visit.

This has got to be hard for him and I understand that he is only almost 10 and things look a lot different to a 10 year old. I just need some techniques to use on him so we can get passed the attitude. I am going to discuss with his Doc about ordering either the vest or another device to speed the treatments up for him and us. He looks at an hour and 15 minutes as forever. and to him it is. We normally turn on cartoons and let him watch TV while we pound on him for 40 minutes.

Oh, just another question I had, After treatments should he be coughing up something or even just coughing a little? There is no change in him after his treatments. He doesnt even cough during. He has not had any mucas since they started him on his steroid back in October. His lung fuction returned to 100%. We have had only a few episodes of an attack since October. He even did the Mile run in school with no problems.

You know, 2 years ago I made the comment that we were very fortunate to have 8 healthy children and since then it seems like the world is crashing in.
Tuesday we found out that my 16 year old has a deformed Aoritic valve, Hypertention and PSVT. His blood pressure has been really high now for almost a year and it took it to go over 175/98 for a doctor to say "holy crap that to high".
One of my other daughter was just diagnosed with a leeky valve. She is fine though. Its very small and no surgery is needed rigt now.

I know things could be much worse and we are really glad they arent. BUT how large does God think my shoulders are?????

Thanks for letting me vent!
Tina <img src="i/expressions/face-icon-small-frown.gif" border="0">

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
Hey there everyone,

We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment on July 1st I plan on raising holy hell.

2nd, Dylan is having a real hard time understanding why his meds are so important. He knows he feels good right now and has for awhile now. So he gives us a lot of attitude when we do his treatments in the morning. Also, we started him on the scanishake 2 twice daily to boost his weight and I caught him dumping it out. I mix it with chocolate suryp so it takes pretty good so I know it doesnt taste bad. And when I caught him dumping it he lied and said he drank it. He wants to play popwarner football so bad this August and if he doenst gain 5 pounds he cant. We have tried to explain this to him in many different ways but it doesnt seem to get through. He is starting with the attitude that "I cant do that because Im sick". We are the type of family that regardless if you are sick or not there are no limitations. You can do whatever you want when you want to do it. (within reason of course) I am not sure where this is coming from. I plan on speeking witht he phycologist when we are at his visit.

This has got to be hard for him and I understand that he is only almost 10 and things look a lot different to a 10 year old. I just need some techniques to use on him so we can get passed the attitude. I am going to discuss with his Doc about ordering either the vest or another device to speed the treatments up for him and us. He looks at an hour and 15 minutes as forever. and to him it is. We normally turn on cartoons and let him watch TV while we pound on him for 40 minutes.

Oh, just another question I had, After treatments should he be coughing up something or even just coughing a little? There is no change in him after his treatments. He doesnt even cough during. He has not had any mucas since they started him on his steroid back in October. His lung fuction returned to 100%. We have had only a few episodes of an attack since October. He even did the Mile run in school with no problems.

You know, 2 years ago I made the comment that we were very fortunate to have 8 healthy children and since then it seems like the world is crashing in.
Tuesday we found out that my 16 year old has a deformed Aoritic valve, Hypertention and PSVT. His blood pressure has been really high now for almost a year and it took it to go over 175/98 for a doctor to say "holy crap that to high".
One of my other daughter was just diagnosed with a leeky valve. She is fine though. Its very small and no surgery is needed rigt now.

I know things could be much worse and we are really glad they arent. BUT how large does God think my shoulders are?????

Thanks for letting me vent!
Tina <img src="i/expressions/face-icon-small-frown.gif" border="0">

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
Hey there everyone,

We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment on July 1st I plan on raising holy hell.

2nd, Dylan is having a real hard time understanding why his meds are so important. He knows he feels good right now and has for awhile now. So he gives us a lot of attitude when we do his treatments in the morning. Also, we started him on the scanishake 2 twice daily to boost his weight and I caught him dumping it out. I mix it with chocolate suryp so it takes pretty good so I know it doesnt taste bad. And when I caught him dumping it he lied and said he drank it. He wants to play popwarner football so bad this August and if he doenst gain 5 pounds he cant. We have tried to explain this to him in many different ways but it doesnt seem to get through. He is starting with the attitude that "I cant do that because Im sick". We are the type of family that regardless if you are sick or not there are no limitations. You can do whatever you want when you want to do it. (within reason of course) I am not sure where this is coming from. I plan on speeking witht he phycologist when we are at his visit.

This has got to be hard for him and I understand that he is only almost 10 and things look a lot different to a 10 year old. I just need some techniques to use on him so we can get passed the attitude. I am going to discuss with his Doc about ordering either the vest or another device to speed the treatments up for him and us. He looks at an hour and 15 minutes as forever. and to him it is. We normally turn on cartoons and let him watch TV while we pound on him for 40 minutes.

Oh, just another question I had, After treatments should he be coughing up something or even just coughing a little? There is no change in him after his treatments. He doesnt even cough during. He has not had any mucas since they started him on his steroid back in October. His lung fuction returned to 100%. We have had only a few episodes of an attack since October. He even did the Mile run in school with no problems.

You know, 2 years ago I made the comment that we were very fortunate to have 8 healthy children and since then it seems like the world is crashing in.
Tuesday we found out that my 16 year old has a deformed Aoritic valve, Hypertention and PSVT. His blood pressure has been really high now for almost a year and it took it to go over 175/98 for a doctor to say "holy crap that to high".
One of my other daughter was just diagnosed with a leeky valve. She is fine though. Its very small and no surgery is needed rigt now.

I know things could be much worse and we are really glad they arent. BUT how large does God think my shoulders are?????

Thanks for letting me vent!
Tina <img src="i/expressions/face-icon-small-frown.gif" border="0">

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
Hey there everyone,

We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment on July 1st I plan on raising holy hell.

2nd, Dylan is having a real hard time understanding why his meds are so important. He knows he feels good right now and has for awhile now. So he gives us a lot of attitude when we do his treatments in the morning. Also, we started him on the scanishake 2 twice daily to boost his weight and I caught him dumping it out. I mix it with chocolate suryp so it takes pretty good so I know it doesnt taste bad. And when I caught him dumping it he lied and said he drank it. He wants to play popwarner football so bad this August and if he doenst gain 5 pounds he cant. We have tried to explain this to him in many different ways but it doesnt seem to get through. He is starting with the attitude that "I cant do that because Im sick". We are the type of family that regardless if you are sick or not there are no limitations. You can do whatever you want when you want to do it. (within reason of course) I am not sure where this is coming from. I plan on speeking witht he phycologist when we are at his visit.

This has got to be hard for him and I understand that he is only almost 10 and things look a lot different to a 10 year old. I just need some techniques to use on him so we can get passed the attitude. I am going to discuss with his Doc about ordering either the vest or another device to speed the treatments up for him and us. He looks at an hour and 15 minutes as forever. and to him it is. We normally turn on cartoons and let him watch TV while we pound on him for 40 minutes.

Oh, just another question I had, After treatments should he be coughing up something or even just coughing a little? There is no change in him after his treatments. He doesnt even cough during. He has not had any mucas since they started him on his steroid back in October. His lung fuction returned to 100%. We have had only a few episodes of an attack since October. He even did the Mile run in school with no problems.

You know, 2 years ago I made the comment that we were very fortunate to have 8 healthy children and since then it seems like the world is crashing in.
Tuesday we found out that my 16 year old has a deformed Aoritic valve, Hypertention and PSVT. His blood pressure has been really high now for almost a year and it took it to go over 175/98 for a doctor to say "holy crap that to high".
One of my other daughter was just diagnosed with a leeky valve. She is fine though. Its very small and no surgery is needed rigt now.

I know things could be much worse and we are really glad they arent. BUT how large does God think my shoulders are?????

Thanks for letting me vent!
Tina <img src="i/expressions/face-icon-small-frown.gif" border="0">

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

holmfamily1992

New member
Hey there everyone,
<br />
<br />We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment on July 1st I plan on raising holy hell.
<br />
<br />2nd, Dylan is having a real hard time understanding why his meds are so important. He knows he feels good right now and has for awhile now. So he gives us a lot of attitude when we do his treatments in the morning. Also, we started him on the scanishake 2 twice daily to boost his weight and I caught him dumping it out. I mix it with chocolate suryp so it takes pretty good so I know it doesnt taste bad. And when I caught him dumping it he lied and said he drank it. He wants to play popwarner football so bad this August and if he doenst gain 5 pounds he cant. We have tried to explain this to him in many different ways but it doesnt seem to get through. He is starting with the attitude that "I cant do that because Im sick". We are the type of family that regardless if you are sick or not there are no limitations. You can do whatever you want when you want to do it. (within reason of course) I am not sure where this is coming from. I plan on speeking witht he phycologist when we are at his visit.
<br />
<br />This has got to be hard for him and I understand that he is only almost 10 and things look a lot different to a 10 year old. I just need some techniques to use on him so we can get passed the attitude. I am going to discuss with his Doc about ordering either the vest or another device to speed the treatments up for him and us. He looks at an hour and 15 minutes as forever. and to him it is. We normally turn on cartoons and let him watch TV while we pound on him for 40 minutes.
<br />
<br />Oh, just another question I had, After treatments should he be coughing up something or even just coughing a little? There is no change in him after his treatments. He doesnt even cough during. He has not had any mucas since they started him on his steroid back in October. His lung fuction returned to 100%. We have had only a few episodes of an attack since October. He even did the Mile run in school with no problems.
<br />
<br />You know, 2 years ago I made the comment that we were very fortunate to have 8 healthy children and since then it seems like the world is crashing in.
<br />Tuesday we found out that my 16 year old has a deformed Aoritic valve, Hypertention and PSVT. His blood pressure has been really high now for almost a year and it took it to go over 175/98 for a doctor to say "holy crap that to high".
<br />One of my other daughter was just diagnosed with a leeky valve. She is fine though. Its very small and no surgery is needed rigt now.
<br />
<br />I know things could be much worse and we are really glad they arent. BUT how large does God think my shoulders are?????
<br />
<br />Thanks for letting me vent!
<br />Tina <img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 

JazzysMom

New member
I am sorry things are difficult!

Maybe explain CF to him like a car....

A car can be brand new, but if the brakes arent maintained, tires, oil changes etc then it wont run properly & eventually will cause permanent damage. OR think of his meds/treatments as the gas in a car......it is running fine until you let the gas get to low & then you are stuck!

HUGS to ya
 

JazzysMom

New member
I am sorry things are difficult!

Maybe explain CF to him like a car....

A car can be brand new, but if the brakes arent maintained, tires, oil changes etc then it wont run properly & eventually will cause permanent damage. OR think of his meds/treatments as the gas in a car......it is running fine until you let the gas get to low & then you are stuck!

HUGS to ya
 

JazzysMom

New member
I am sorry things are difficult!

Maybe explain CF to him like a car....

A car can be brand new, but if the brakes arent maintained, tires, oil changes etc then it wont run properly & eventually will cause permanent damage. OR think of his meds/treatments as the gas in a car......it is running fine until you let the gas get to low & then you are stuck!

HUGS to ya
 

JazzysMom

New member
I am sorry things are difficult!

Maybe explain CF to him like a car....

A car can be brand new, but if the brakes arent maintained, tires, oil changes etc then it wont run properly & eventually will cause permanent damage. OR think of his meds/treatments as the gas in a car......it is running fine until you let the gas get to low & then you are stuck!

HUGS to ya
 

JazzysMom

New member
I am sorry things are difficult!
<br />
<br />Maybe explain CF to him like a car....
<br />
<br />A car can be brand new, but if the brakes arent maintained, tires, oil changes etc then it wont run properly & eventually will cause permanent damage. OR think of his meds/treatments as the gas in a car......it is running fine until you let the gas get to low & then you are stuck!
<br />
<br />HUGS to ya
 

shoot4parr

New member
Wow, I you are certainly dealing with alot, I give you such credit. It's funny that we find ourselves thanking God that things are not worse. We recently were at Childrens Hospital of Philadelphia and while in the elevator my boyfriend and I looked at eachother with a sigh of relief that we were getting off at the 3rd floor, the CF clinic, and not the 5th, Oncology. Crazy huh...good luck with everything.
 

shoot4parr

New member
Wow, I you are certainly dealing with alot, I give you such credit. It's funny that we find ourselves thanking God that things are not worse. We recently were at Childrens Hospital of Philadelphia and while in the elevator my boyfriend and I looked at eachother with a sigh of relief that we were getting off at the 3rd floor, the CF clinic, and not the 5th, Oncology. Crazy huh...good luck with everything.
 

shoot4parr

New member
Wow, I you are certainly dealing with alot, I give you such credit. It's funny that we find ourselves thanking God that things are not worse. We recently were at Childrens Hospital of Philadelphia and while in the elevator my boyfriend and I looked at eachother with a sigh of relief that we were getting off at the 3rd floor, the CF clinic, and not the 5th, Oncology. Crazy huh...good luck with everything.
 

shoot4parr

New member
Wow, I you are certainly dealing with alot, I give you such credit. It's funny that we find ourselves thanking God that things are not worse. We recently were at Childrens Hospital of Philadelphia and while in the elevator my boyfriend and I looked at eachother with a sigh of relief that we were getting off at the 3rd floor, the CF clinic, and not the 5th, Oncology. Crazy huh...good luck with everything.
 

shoot4parr

New member
Wow, I you are certainly dealing with alot, I give you such credit. It's funny that we find ourselves thanking God that things are not worse. We recently were at Childrens Hospital of Philadelphia and while in the elevator my boyfriend and I looked at eachother with a sigh of relief that we were getting off at the 3rd floor, the CF clinic, and not the 5th, Oncology. Crazy huh...good luck with everything.
 

JORDYSMOM

New member
Tina, I understand. I go through this with Jordan. He was dx late, so treatments weren't a habit that he formed from infantcy. It's very hard for a child to understand why he has to suddenly start doing hours of treatments and meds. Jordan tells me that he feels fine too. I tell him that he feels fine BECAUSE of the treatments, and he needs to keep doing them so he can keep feeling fine. It's a constant battle though.

I wish I had some great answer for you, but I don't. I just want you to know that you are not alone.

((((((((hugs))))))))))

Stacey
 

JORDYSMOM

New member
Tina, I understand. I go through this with Jordan. He was dx late, so treatments weren't a habit that he formed from infantcy. It's very hard for a child to understand why he has to suddenly start doing hours of treatments and meds. Jordan tells me that he feels fine too. I tell him that he feels fine BECAUSE of the treatments, and he needs to keep doing them so he can keep feeling fine. It's a constant battle though.

I wish I had some great answer for you, but I don't. I just want you to know that you are not alone.

((((((((hugs))))))))))

Stacey
 

JORDYSMOM

New member
Tina, I understand. I go through this with Jordan. He was dx late, so treatments weren't a habit that he formed from infantcy. It's very hard for a child to understand why he has to suddenly start doing hours of treatments and meds. Jordan tells me that he feels fine too. I tell him that he feels fine BECAUSE of the treatments, and he needs to keep doing them so he can keep feeling fine. It's a constant battle though.

I wish I had some great answer for you, but I don't. I just want you to know that you are not alone.

((((((((hugs))))))))))

Stacey
 

JORDYSMOM

New member
Tina, I understand. I go through this with Jordan. He was dx late, so treatments weren't a habit that he formed from infantcy. It's very hard for a child to understand why he has to suddenly start doing hours of treatments and meds. Jordan tells me that he feels fine too. I tell him that he feels fine BECAUSE of the treatments, and he needs to keep doing them so he can keep feeling fine. It's a constant battle though.

I wish I had some great answer for you, but I don't. I just want you to know that you are not alone.

((((((((hugs))))))))))

Stacey
 

JORDYSMOM

New member
Tina, I understand. I go through this with Jordan. He was dx late, so treatments weren't a habit that he formed from infantcy. It's very hard for a child to understand why he has to suddenly start doing hours of treatments and meds. Jordan tells me that he feels fine too. I tell him that he feels fine BECAUSE of the treatments, and he needs to keep doing them so he can keep feeling fine. It's a constant battle though.
<br />
<br />I wish I had some great answer for you, but I don't. I just want you to know that you are not alone.
<br />
<br />((((((((hugs))))))))))
<br />
<br />Stacey
 
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