What is your daily routine?

V

vmhoward

New member
I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.

As for the boiling of the neb, we boil the E-Flow parts but the Pari nebs we just use the dishwasher.

As far as getting up in the middle of the night (Liza)I thought that was just hilarious that you almost gave your husband the meds. because I have done the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vmhoward

New member
I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.

As for the boiling of the neb, we boil the E-Flow parts but the Pari nebs we just use the dishwasher.

As far as getting up in the middle of the night (Liza)I thought that was just hilarious that you almost gave your husband the meds. because I have done the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vmhoward

New member
I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.

As for the boiling of the neb, we boil the E-Flow parts but the Pari nebs we just use the dishwasher.

As far as getting up in the middle of the night (Liza)I thought that was just hilarious that you almost gave your husband the meds. because I have done the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vmhoward

New member
I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.

As for the boiling of the neb, we boil the E-Flow parts but the Pari nebs we just use the dishwasher.

As far as getting up in the middle of the night (Liza)I thought that was just hilarious that you almost gave your husband the meds. because I have done the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vmhoward

New member
I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.
<br />
<br />Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.
<br />
<br />I hope you all know how much it means to us.
<br />
<br />As for the boiling of the neb, we boil the E-Flow parts but the Pari nebs we just use the dishwasher.
<br />
<br />As far as getting up in the middle of the night (Liza)I thought that was just hilarious that you almost gave your husband the meds. because I have done the same thing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
 
T

Terry

Guest
Hello!
This is our schedule:

6:30 a.m. - Wake up
Disconnect Mic-Key and flush with water (syringe)
Peak Flow
Albuterol Neb
20 minutes on Vest
Flovent Inhaler
Peak Flow
Nasonex if Needed
Scandi-shake or Breakfast

9:30 a.m. - Snack
Ultrase

12:00 p.m. - Lunch
Ultrase

2:00 p.m. - Peak Flow
Albuterol Neb if PF below 240
Snack
Ultrase

5:30 p.m. - Dinner
Ultrase
Adek Vitamins
Singulair

6:30 p.m. - Peak Flow
Albuterol Neb
Pulmozyme Neb
Vest - 20 minutes
Flovent Inhaler
Peak Flow

8:00 p.m. - Flush Mic-Key with syringe of water
Ultrase
3 cans of Nutren 2.0 in feeding tube


This is when we are not doing TOBI or antibiotics. Cipro is the best antibiotic for her, but it really upsets the schedule with with having to take it an hour before any dairy or Prevacid.

Somewhere in between we take baths, do homework, and HAVE FUN!! lol
 
T

Terry

Guest
Hello!
This is our schedule:

6:30 a.m. - Wake up
Disconnect Mic-Key and flush with water (syringe)
Peak Flow
Albuterol Neb
20 minutes on Vest
Flovent Inhaler
Peak Flow
Nasonex if Needed
Scandi-shake or Breakfast

9:30 a.m. - Snack
Ultrase

12:00 p.m. - Lunch
Ultrase

2:00 p.m. - Peak Flow
Albuterol Neb if PF below 240
Snack
Ultrase

5:30 p.m. - Dinner
Ultrase
Adek Vitamins
Singulair

6:30 p.m. - Peak Flow
Albuterol Neb
Pulmozyme Neb
Vest - 20 minutes
Flovent Inhaler
Peak Flow

8:00 p.m. - Flush Mic-Key with syringe of water
Ultrase
3 cans of Nutren 2.0 in feeding tube


This is when we are not doing TOBI or antibiotics. Cipro is the best antibiotic for her, but it really upsets the schedule with with having to take it an hour before any dairy or Prevacid.

Somewhere in between we take baths, do homework, and HAVE FUN!! lol
 
T

Terry

Guest
Hello!
This is our schedule:

6:30 a.m. - Wake up
Disconnect Mic-Key and flush with water (syringe)
Peak Flow
Albuterol Neb
20 minutes on Vest
Flovent Inhaler
Peak Flow
Nasonex if Needed
Scandi-shake or Breakfast

9:30 a.m. - Snack
Ultrase

12:00 p.m. - Lunch
Ultrase

2:00 p.m. - Peak Flow
Albuterol Neb if PF below 240
Snack
Ultrase

5:30 p.m. - Dinner
Ultrase
Adek Vitamins
Singulair

6:30 p.m. - Peak Flow
Albuterol Neb
Pulmozyme Neb
Vest - 20 minutes
Flovent Inhaler
Peak Flow

8:00 p.m. - Flush Mic-Key with syringe of water
Ultrase
3 cans of Nutren 2.0 in feeding tube


This is when we are not doing TOBI or antibiotics. Cipro is the best antibiotic for her, but it really upsets the schedule with with having to take it an hour before any dairy or Prevacid.

Somewhere in between we take baths, do homework, and HAVE FUN!! lol
 
T

Terry

Guest
Hello!
This is our schedule:

6:30 a.m. - Wake up
Disconnect Mic-Key and flush with water (syringe)
Peak Flow
Albuterol Neb
20 minutes on Vest
Flovent Inhaler
Peak Flow
Nasonex if Needed
Scandi-shake or Breakfast

9:30 a.m. - Snack
Ultrase

12:00 p.m. - Lunch
Ultrase

2:00 p.m. - Peak Flow
Albuterol Neb if PF below 240
Snack
Ultrase

5:30 p.m. - Dinner
Ultrase
Adek Vitamins
Singulair

6:30 p.m. - Peak Flow
Albuterol Neb
Pulmozyme Neb
Vest - 20 minutes
Flovent Inhaler
Peak Flow

8:00 p.m. - Flush Mic-Key with syringe of water
Ultrase
3 cans of Nutren 2.0 in feeding tube


This is when we are not doing TOBI or antibiotics. Cipro is the best antibiotic for her, but it really upsets the schedule with with having to take it an hour before any dairy or Prevacid.

Somewhere in between we take baths, do homework, and HAVE FUN!! lol
 
T

Terry

Guest
Hello!
<br />This is our schedule:
<br />
<br />6:30 a.m. - Wake up
<br /> Disconnect Mic-Key and flush with water (syringe)
<br /> Peak Flow
<br /> Albuterol Neb
<br /> 20 minutes on Vest
<br /> Flovent Inhaler
<br /> Peak Flow
<br /> Nasonex if Needed
<br /> Scandi-shake or Breakfast
<br />
<br />9:30 a.m. - Snack
<br /> Ultrase
<br />
<br />12:00 p.m. - Lunch
<br /> Ultrase
<br />
<br />2:00 p.m. - Peak Flow
<br /> Albuterol Neb if PF below 240
<br /> Snack
<br /> Ultrase
<br />
<br />5:30 p.m. - Dinner
<br /> Ultrase
<br /> Adek Vitamins
<br /> Singulair
<br />
<br />6:30 p.m. - Peak Flow
<br /> Albuterol Neb
<br /> Pulmozyme Neb
<br /> Vest - 20 minutes
<br /> Flovent Inhaler
<br /> Peak Flow
<br />
<br />8:00 p.m. - Flush Mic-Key with syringe of water
<br /> Ultrase
<br /> 3 cans of Nutren 2.0 in feeding tube
<br />
<br />
<br />This is when we are not doing TOBI or antibiotics. Cipro is the best antibiotic for her, but it really upsets the schedule with with having to take it an hour before any dairy or Prevacid.
<br />
<br />Somewhere in between we take baths, do homework, and HAVE FUN!! lol
<br />
<br />
 
S

Skye

New member
Oh my gosh, I don't spend much time in the family section; but, I thought I would peak at this post. I have NO EARTHLY IDEA how you guys all do this every day. I find it incredibly difficult to take care of myself and my non CF daughter. I can't imagine the battles you all must fight on those grumpy and tired days. I saw one woman post that she keeps her kitchen meticulous when she sterilizes nebs to protect her child. Wow, you guys. Your children will THANK you for this as adults; but, how difficult these routines must be for all of you. I hope you can all find laughter in the small moments<img src=""> Just to share a bit of me. When I was a very young child, they had CFers sleeping in mist tents over their beds at night. It was a very very bad idea but it was what they did at the time. My poor mother had to sterilize the entire tent every day in the bath tub to be used for the next night. She had 4 under the age of 5 at that time. It is amazing she survived those years at all; but, I am forever greatful for her love and care all these years later despite my protest at the time. KUDOS to all of you!!
 
S

Skye

New member
Oh my gosh, I don't spend much time in the family section; but, I thought I would peak at this post. I have NO EARTHLY IDEA how you guys all do this every day. I find it incredibly difficult to take care of myself and my non CF daughter. I can't imagine the battles you all must fight on those grumpy and tired days. I saw one woman post that she keeps her kitchen meticulous when she sterilizes nebs to protect her child. Wow, you guys. Your children will THANK you for this as adults; but, how difficult these routines must be for all of you. I hope you can all find laughter in the small moments<img src=""> Just to share a bit of me. When I was a very young child, they had CFers sleeping in mist tents over their beds at night. It was a very very bad idea but it was what they did at the time. My poor mother had to sterilize the entire tent every day in the bath tub to be used for the next night. She had 4 under the age of 5 at that time. It is amazing she survived those years at all; but, I am forever greatful for her love and care all these years later despite my protest at the time. KUDOS to all of you!!
 
S

Skye

New member
Oh my gosh, I don't spend much time in the family section; but, I thought I would peak at this post. I have NO EARTHLY IDEA how you guys all do this every day. I find it incredibly difficult to take care of myself and my non CF daughter. I can't imagine the battles you all must fight on those grumpy and tired days. I saw one woman post that she keeps her kitchen meticulous when she sterilizes nebs to protect her child. Wow, you guys. Your children will THANK you for this as adults; but, how difficult these routines must be for all of you. I hope you can all find laughter in the small moments<img src=""> Just to share a bit of me. When I was a very young child, they had CFers sleeping in mist tents over their beds at night. It was a very very bad idea but it was what they did at the time. My poor mother had to sterilize the entire tent every day in the bath tub to be used for the next night. She had 4 under the age of 5 at that time. It is amazing she survived those years at all; but, I am forever greatful for her love and care all these years later despite my protest at the time. KUDOS to all of you!!
 
S

Skye

New member
Oh my gosh, I don't spend much time in the family section; but, I thought I would peak at this post. I have NO EARTHLY IDEA how you guys all do this every day. I find it incredibly difficult to take care of myself and my non CF daughter. I can't imagine the battles you all must fight on those grumpy and tired days. I saw one woman post that she keeps her kitchen meticulous when she sterilizes nebs to protect her child. Wow, you guys. Your children will THANK you for this as adults; but, how difficult these routines must be for all of you. I hope you can all find laughter in the small moments<img src=""> Just to share a bit of me. When I was a very young child, they had CFers sleeping in mist tents over their beds at night. It was a very very bad idea but it was what they did at the time. My poor mother had to sterilize the entire tent every day in the bath tub to be used for the next night. She had 4 under the age of 5 at that time. It is amazing she survived those years at all; but, I am forever greatful for her love and care all these years later despite my protest at the time. KUDOS to all of you!!
 
S

Skye

New member
Oh my gosh, I don't spend much time in the family section; but, I thought I would peak at this post. I have NO EARTHLY IDEA how you guys all do this every day. I find it incredibly difficult to take care of myself and my non CF daughter. I can't imagine the battles you all must fight on those grumpy and tired days. I saw one woman post that she keeps her kitchen meticulous when she sterilizes nebs to protect her child. Wow, you guys. Your children will THANK you for this as adults; but, how difficult these routines must be for all of you. I hope you can all find laughter in the small moments<img src=""> Just to share a bit of me. When I was a very young child, they had CFers sleeping in mist tents over their beds at night. It was a very very bad idea but it was what they did at the time. My poor mother had to sterilize the entire tent every day in the bath tub to be used for the next night. She had 4 under the age of 5 at that time. It is amazing she survived those years at all; but, I am forever greatful for her love and care all these years later despite my protest at the time. KUDOS to all of you!!
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vmhoward</b></i>

I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.</end quote></div>

Well, as my husband and I remind ourselves when we sometimes get into a battle over who is doing what to keep the household running, <b>"it's not a contest!"</b> So I for one was inspired by this entire post to personally keep on keeping on. It helps to know that everyone is in the same boat! I just wish I could provide some relief to any and all of you from time to time. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vmhoward</b></i>

I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.</end quote></div>

Well, as my husband and I remind ourselves when we sometimes get into a battle over who is doing what to keep the household running, <b>"it's not a contest!"</b> So I for one was inspired by this entire post to personally keep on keeping on. It helps to know that everyone is in the same boat! I just wish I could provide some relief to any and all of you from time to time. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vmhoward</b></i>

I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.</end quote></div>

Well, as my husband and I remind ourselves when we sometimes get into a battle over who is doing what to keep the household running, <b>"it's not a contest!"</b> So I for one was inspired by this entire post to personally keep on keeping on. It helps to know that everyone is in the same boat! I just wish I could provide some relief to any and all of you from time to time. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vmhoward</b></i>

I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.

Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.

I hope you all know how much it means to us.</end quote>

Well, as my husband and I remind ourselves when we sometimes get into a battle over who is doing what to keep the household running, <b>"it's not a contest!"</b> So I for one was inspired by this entire post to personally keep on keeping on. It helps to know that everyone is in the same boat! I just wish I could provide some relief to any and all of you from time to time. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vmhoward</b></i>
<br />
<br />I just wanted to clarify. I would never say that I, as a Mom do any more than any other Mom, or caregiver. I was just being very matter of fact, that this is our routine. I know that everyone has to deal with just as much as we do. I always do my best not to belittle anyones problems or stresses. I hope my post didnt sound like I was whining or complaining. I wasnt.
<br />
<br />Since I have been here on the site I have always treasured the encouragement you all have given us. And have done my best to give it back in return.
<br />
<br />I hope you all know how much it means to us.</end quote>
<br />
<br />Well, as my husband and I remind ourselves when we sometimes get into a battle over who is doing what to keep the household running, <b>"it's not a contest!"</b> So I for one was inspired by this entire post to personally keep on keeping on. It helps to know that everyone is in the same boat! I just wish I could provide some relief to any and all of you from time to time. <img src="i/expressions/heart.gif" border="0">
 
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