Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in my compulsion to record diet, weight gain and loss, doctor appointments, breathing treatments, and such; we never addressed this point. Well after sitting with that for a few minutes I realized how grateful I am. Parker has been hospitalized 6 times in 11 years because of this disease (2 sinuses, g-tube placement, adnoid removal, origional diagnosis, and a dehydration episode last summer during summer camp in Texas). We are incredibly lucky and that was something that the staff was saying over and over when he was in the hospital to have needed so few hospitalizations. I feel a little guilty commenting on this when I read everyone elses posts but I also realize that you all would understand this more than anyone else. I track the research and work with familes and support the CF foundation any way I can, I actually had to educate the hospital staff in Texas about how to treat CF and acquire g-tube extensions for them to treat my son (another story). I feel blessed to be in the situation I am in and grateful. Parker's DNA test results were Homozygous D508. Now I contiune my work caring for my son and awaiting the results of Vertex VX-770 and VX-809 clinical trials.
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Oh by the way lets do a DNA test since you are here.
- Thread starter jimiv
- Start date
Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in my compulsion to record diet, weight gain and loss, doctor appointments, breathing treatments, and such; we never addressed this point. Well after sitting with that for a few minutes I realized how grateful I am. Parker has been hospitalized 6 times in 11 years because of this disease (2 sinuses, g-tube placement, adnoid removal, origional diagnosis, and a dehydration episode last summer during summer camp in Texas). We are incredibly lucky and that was something that the staff was saying over and over when he was in the hospital to have needed so few hospitalizations. I feel a little guilty commenting on this when I read everyone elses posts but I also realize that you all would understand this more than anyone else. I track the research and work with familes and support the CF foundation any way I can, I actually had to educate the hospital staff in Texas about how to treat CF and acquire g-tube extensions for them to treat my son (another story). I feel blessed to be in the situation I am in and grateful. Parker's DNA test results were Homozygous D508. Now I contiune my work caring for my son and awaiting the results of Vertex VX-770 and VX-809 clinical trials.
Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in my compulsion to record diet, weight gain and loss, doctor appointments, breathing treatments, and such; we never addressed this point. Well after sitting with that for a few minutes I realized how grateful I am. Parker has been hospitalized 6 times in 11 years because of this disease (2 sinuses, g-tube placement, adnoid removal, origional diagnosis, and a dehydration episode last summer during summer camp in Texas). We are incredibly lucky and that was something that the staff was saying over and over when he was in the hospital to have needed so few hospitalizations. I feel a little guilty commenting on this when I read everyone elses posts but I also realize that you all would understand this more than anyone else. I track the research and work with familes and support the CF foundation any way I can, I actually had to educate the hospital staff in Texas about how to treat CF and acquire g-tube extensions for them to treat my son (another story). I feel blessed to be in the situation I am in and grateful. Parker's DNA test results were Homozygous D508. Now I contiune my work caring for my son and awaiting the results of Vertex VX-770 and VX-809 clinical trials.
Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in my compulsion to record diet, weight gain and loss, doctor appointments, breathing treatments, and such; we never addressed this point. Well after sitting with that for a few minutes I realized how grateful I am. Parker has been hospitalized 6 times in 11 years because of this disease (2 sinuses, g-tube placement, adnoid removal, origional diagnosis, and a dehydration episode last summer during summer camp in Texas). We are incredibly lucky and that was something that the staff was saying over and over when he was in the hospital to have needed so few hospitalizations. I feel a little guilty commenting on this when I read everyone elses posts but I also realize that you all would understand this more than anyone else. I track the research and work with familes and support the CF foundation any way I can, I actually had to educate the hospital staff in Texas about how to treat CF and acquire g-tube extensions for them to treat my son (another story). I feel blessed to be in the situation I am in and grateful. Parker's DNA test results were Homozygous D508. Now I contiune my work caring for my son and awaiting the results of Vertex VX-770 and VX-809 clinical trials.
Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in my compulsion to record diet, weight gain and loss, doctor appointments, breathing treatments, and such; we never addressed this point. Well after sitting with that for a few minutes I realized how grateful I am. Parker has been hospitalized 6 times in 11 years because of this disease (2 sinuses, g-tube placement, adnoid removal, origional diagnosis, and a dehydration episode last summer during summer camp in Texas). We are incredibly lucky and that was something that the staff was saying over and over when he was in the hospital to have needed so few hospitalizations. I feel a little guilty commenting on this when I read everyone elses posts but I also realize that you all would understand this more than anyone else. I track the research and work with familes and support the CF foundation any way I can, I actually had to educate the hospital staff in Texas about how to treat CF and acquire g-tube extensions for them to treat my son (another story). I feel blessed to be in the situation I am in and grateful. Parker's DNA test results were Homozygous D508. Now I contiune my work caring for my son and awaiting the results of Vertex VX-770 and VX-809 clinical trials.
M
Mommafirst
Guest
I'm glad your doctor moved the train forward to get you this information. It doesn't really matter, and yet it opens a whole world of possibilities with the new vertex drugs.
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
I'm glad your doctor moved the train forward to get you this information. It doesn't really matter, and yet it opens a whole world of possibilities with the new vertex drugs.
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
I'm glad your doctor moved the train forward to get you this information. It doesn't really matter, and yet it opens a whole world of possibilities with the new vertex drugs.
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
I'm glad your doctor moved the train forward to get you this information. It doesn't really matter, and yet it opens a whole world of possibilities with the new vertex drugs.
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
M
Mommafirst
Guest
I'm glad your doctor moved the train forward to get you this information. It doesn't really matter, and yet it opens a whole world of possibilities with the new vertex drugs.
<br />
<br />Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Isn't it odd that 6 hospitalizations is something to be thankful for?? <img src="i/expressions/face-icon-small-smile.gif" border="0">