How do you keep family updated?

[lexisangels05]

Hey guys, it's been a while... I am sooo happy to say that Lexi had her CF check up today and recieved the best report in sooo long! We are extatic! We have made so many changes: no house plants, no plug-ins or air fresheners, unscented soap, unscented detergents and dryer sheets, unscented beauty products, not going in stores with strong odors, allergin bags on matresses and pillows, allergen reducing air vent covers, steam mop, not reusing towells or dish clothes, not using any sponges, cloroxing my sinks and tubs every night (while Lexi is asleep so she doesn't smell any fumes, the list goes on an on. And she has started school (which would surprise most, but my MIL kept her everyday and was NEVER compliant with the CF rules...

Most of these things do not concern most family members, but some do. My mom and mother-in-law both live nearby and like to keep the kids overnight, so all of these things do apply to them and their homes.

How do you keep folks reminded not to come around sick, not to wear perfume or scented lotions, ect. How do you tell those people that do keep your kids for an extended amount of time to do these special things?

It is so hard b/c I feel like before a family event, I have to call each person individually and find out if someone is sick and to remind them not to wear the perfume...if I don't OMG someone will everytime.

My mom and mil are just as bad sometimes. My mil has mold all around her kitchen sink, in the tile grout in the kitchen, and I have seen it in the bathroom too. My MIL has carpet everywhere, and they both live in older houses... I have asked my MIL a million times not to use sponges, but everytime I go over there, she has one in her sink...and it stinks(even worse)! Also my FIL smokes, outside, but he still smells like an ashtray!!!

Everytime I make them a new list, things change for a while, but months go by and slowly things go back to being DANGEROUS for Lexi.

How do you all keep family and friends following all of the rules. I wouldn't be so anal, but I think Lexi has some asthma and allergies, b/c chemicals and fragrances really make her sick!

 

[lexisangels05]

Hey guys, it's been a while... I am sooo happy to say that Lexi had her CF check up today and recieved the best report in sooo long! We are extatic! We have made so many changes: no house plants, no plug-ins or air fresheners, unscented soap, unscented detergents and dryer sheets, unscented beauty products, not going in stores with strong odors, allergin bags on matresses and pillows, allergen reducing air vent covers, steam mop, not reusing towells or dish clothes, not using any sponges, cloroxing my sinks and tubs every night (while Lexi is asleep so she doesn't smell any fumes, the list goes on an on. And she has started school (which would surprise most, but my MIL kept her everyday and was NEVER compliant with the CF rules...

Most of these things do not concern most family members, but some do. My mom and mother-in-law both live nearby and like to keep the kids overnight, so all of these things do apply to them and their homes.

How do you keep folks reminded not to come around sick, not to wear perfume or scented lotions, ect. How do you tell those people that do keep your kids for an extended amount of time to do these special things?

It is so hard b/c I feel like before a family event, I have to call each person individually and find out if someone is sick and to remind them not to wear the perfume...if I don't OMG someone will everytime.

My mom and mil are just as bad sometimes. My mil has mold all around her kitchen sink, in the tile grout in the kitchen, and I have seen it in the bathroom too. My MIL has carpet everywhere, and they both live in older houses... I have asked my MIL a million times not to use sponges, but everytime I go over there, she has one in her sink...and it stinks(even worse)! Also my FIL smokes, outside, but he still smells like an ashtray!!!

Everytime I make them a new list, things change for a while, but months go by and slowly things go back to being DANGEROUS for Lexi.

How do you all keep family and friends following all of the rules. I wouldn't be so anal, but I think Lexi has some asthma and allergies, b/c chemicals and fragrances really make her sick!

 

[lexisangels05]

Hey guys, it's been a while... I am sooo happy to say that Lexi had her CF check up today and recieved the best report in sooo long! We are extatic! We have made so many changes: no house plants, no plug-ins or air fresheners, unscented soap, unscented detergents and dryer sheets, unscented beauty products, not going in stores with strong odors, allergin bags on matresses and pillows, allergen reducing air vent covers, steam mop, not reusing towells or dish clothes, not using any sponges, cloroxing my sinks and tubs every night (while Lexi is asleep so she doesn't smell any fumes, the list goes on an on. And she has started school (which would surprise most, but my MIL kept her everyday and was NEVER compliant with the CF rules...

Most of these things do not concern most family members, but some do. My mom and mother-in-law both live nearby and like to keep the kids overnight, so all of these things do apply to them and their homes.

How do you keep folks reminded not to come around sick, not to wear perfume or scented lotions, ect. How do you tell those people that do keep your kids for an extended amount of time to do these special things?

It is so hard b/c I feel like before a family event, I have to call each person individually and find out if someone is sick and to remind them not to wear the perfume...if I don't OMG someone will everytime.

My mom and mil are just as bad sometimes. My mil has mold all around her kitchen sink, in the tile grout in the kitchen, and I have seen it in the bathroom too. My MIL has carpet everywhere, and they both live in older houses... I have asked my MIL a million times not to use sponges, but everytime I go over there, she has one in her sink...and it stinks(even worse)! Also my FIL smokes, outside, but he still smells like an ashtray!!!

Everytime I make them a new list, things change for a while, but months go by and slowly things go back to being DANGEROUS for Lexi.

How do you all keep family and friends following all of the rules. I wouldn't be so anal, but I think Lexi has some asthma and allergies, b/c chemicals and fragrances really make her sick!

 

[lexisangels05]

Hey guys, it's been a while... I am sooo happy to say that Lexi had her CF check up today and recieved the best report in sooo long! We are extatic! We have made so many changes: no house plants, no plug-ins or air fresheners, unscented soap, unscented detergents and dryer sheets, unscented beauty products, not going in stores with strong odors, allergin bags on matresses and pillows, allergen reducing air vent covers, steam mop, not reusing towells or dish clothes, not using any sponges, cloroxing my sinks and tubs every night (while Lexi is asleep so she doesn't smell any fumes, the list goes on an on. And she has started school (which would surprise most, but my MIL kept her everyday and was NEVER compliant with the CF rules...

Most of these things do not concern most family members, but some do. My mom and mother-in-law both live nearby and like to keep the kids overnight, so all of these things do apply to them and their homes.

How do you keep folks reminded not to come around sick, not to wear perfume or scented lotions, ect. How do you tell those people that do keep your kids for an extended amount of time to do these special things?

It is so hard b/c I feel like before a family event, I have to call each person individually and find out if someone is sick and to remind them not to wear the perfume...if I don't OMG someone will everytime.

My mom and mil are just as bad sometimes. My mil has mold all around her kitchen sink, in the tile grout in the kitchen, and I have seen it in the bathroom too. My MIL has carpet everywhere, and they both live in older houses... I have asked my MIL a million times not to use sponges, but everytime I go over there, she has one in her sink...and it stinks(even worse)! Also my FIL smokes, outside, but he still smells like an ashtray!!!

Everytime I make them a new list, things change for a while, but months go by and slowly things go back to being DANGEROUS for Lexi.

How do you all keep family and friends following all of the rules. I wouldn't be so anal, but I think Lexi has some asthma and allergies, b/c chemicals and fragrances really make her sick!

 

[lexisangels05]

Hey guys, it's been a while... I am sooo happy to say that Lexi had her CF check up today and recieved the best report in sooo long! We are extatic! We have made so many changes: no house plants, no plug-ins or air fresheners, unscented soap, unscented detergents and dryer sheets, unscented beauty products, not going in stores with strong odors, allergin bags on matresses and pillows, allergen reducing air vent covers, steam mop, not reusing towells or dish clothes, not using any sponges, cloroxing my sinks and tubs every night (while Lexi is asleep so she doesn't smell any fumes, the list goes on an on. And she has started school (which would surprise most, but my MIL kept her everyday and was NEVER compliant with the CF rules...
<br />
<br />Most of these things do not concern most family members, but some do. My mom and mother-in-law both live nearby and like to keep the kids overnight, so all of these things do apply to them and their homes.
<br />
<br />How do you keep folks reminded not to come around sick, not to wear perfume or scented lotions, ect. How do you tell those people that do keep your kids for an extended amount of time to do these special things?
<br />
<br />It is so hard b/c I feel like before a family event, I have to call each person individually and find out if someone is sick and to remind them not to wear the perfume...if I don't OMG someone will everytime.
<br />
<br />My mom and mil are just as bad sometimes. My mil has mold all around her kitchen sink, in the tile grout in the kitchen, and I have seen it in the bathroom too. My MIL has carpet everywhere, and they both live in older houses... I have asked my MIL a million times not to use sponges, but everytime I go over there, she has one in her sink...and it stinks(even worse)! Also my FIL smokes, outside, but he still smells like an ashtray!!!
<br />
<br />Everytime I make them a new list, things change for a while, but months go by and slowly things go back to being DANGEROUS for Lexi.
<br />
<br />How do you all keep family and friends following all of the rules. I wouldn't be so anal, but I think Lexi has some asthma and allergies, b/c chemicals and fragrances really make her sick!
<br />
<br />

 

[ymikhale]

I am exactly like you. Mu daughter does not seem to have any allergies/asthma, but I apply the same rules as if she did.

My daughter spends part of her summer at her grandparents' house. To help them take all that in, when I go there I bring a sheet called "general instructions " that I hang on the fridge and ask them to follow that. Since they love to spend time with her and don't see her that often, I tell them that as long as they follow my instructions I will be more than happy to have her stay over.

Of course I cannot check everything they do while i am not there, but I know that the house plants are not in the areas where she goes, no bleach is used to clean the floors etc.

I also bring them her detergent (no fragnance) and organic oils I use.

The being sick/smoking/perfume issue is a tougher one. I am lucky (or unlucky, depending on how you look at it)in a sense that we don't have big family, so I can actually call them up some time in advance and remind that we will have to reschedule if one of them is sick.

To deal with smoking I just make sure that when people come to my house they go outside to smoke and try to keep my daughter at a distance when they come back. And I keep the air purifier running all the time. Of course this is just a compromise between social life and CF but since here in France so many poeple smoke I will become a hermit if I want to avoid people who smoke completely.

I know it is difficult but you have to stand up for your child. Without being rude I would try to make them feel that they can affect her lifespan by their actions.

 

[ymikhale]

I am exactly like you. Mu daughter does not seem to have any allergies/asthma, but I apply the same rules as if she did.

My daughter spends part of her summer at her grandparents' house. To help them take all that in, when I go there I bring a sheet called "general instructions " that I hang on the fridge and ask them to follow that. Since they love to spend time with her and don't see her that often, I tell them that as long as they follow my instructions I will be more than happy to have her stay over.

Of course I cannot check everything they do while i am not there, but I know that the house plants are not in the areas where she goes, no bleach is used to clean the floors etc.

I also bring them her detergent (no fragnance) and organic oils I use.

The being sick/smoking/perfume issue is a tougher one. I am lucky (or unlucky, depending on how you look at it)in a sense that we don't have big family, so I can actually call them up some time in advance and remind that we will have to reschedule if one of them is sick.

To deal with smoking I just make sure that when people come to my house they go outside to smoke and try to keep my daughter at a distance when they come back. And I keep the air purifier running all the time. Of course this is just a compromise between social life and CF but since here in France so many poeple smoke I will become a hermit if I want to avoid people who smoke completely.

I know it is difficult but you have to stand up for your child. Without being rude I would try to make them feel that they can affect her lifespan by their actions.

 

[ymikhale]

I am exactly like you. Mu daughter does not seem to have any allergies/asthma, but I apply the same rules as if she did.

My daughter spends part of her summer at her grandparents' house. To help them take all that in, when I go there I bring a sheet called "general instructions " that I hang on the fridge and ask them to follow that. Since they love to spend time with her and don't see her that often, I tell them that as long as they follow my instructions I will be more than happy to have her stay over.

Of course I cannot check everything they do while i am not there, but I know that the house plants are not in the areas where she goes, no bleach is used to clean the floors etc.

I also bring them her detergent (no fragnance) and organic oils I use.

The being sick/smoking/perfume issue is a tougher one. I am lucky (or unlucky, depending on how you look at it)in a sense that we don't have big family, so I can actually call them up some time in advance and remind that we will have to reschedule if one of them is sick.

To deal with smoking I just make sure that when people come to my house they go outside to smoke and try to keep my daughter at a distance when they come back. And I keep the air purifier running all the time. Of course this is just a compromise between social life and CF but since here in France so many poeple smoke I will become a hermit if I want to avoid people who smoke completely.

I know it is difficult but you have to stand up for your child. Without being rude I would try to make them feel that they can affect her lifespan by their actions.

 

[ymikhale]

I am exactly like you. Mu daughter does not seem to have any allergies/asthma, but I apply the same rules as if she did.

My daughter spends part of her summer at her grandparents' house. To help them take all that in, when I go there I bring a sheet called "general instructions " that I hang on the fridge and ask them to follow that. Since they love to spend time with her and don't see her that often, I tell them that as long as they follow my instructions I will be more than happy to have her stay over.

Of course I cannot check everything they do while i am not there, but I know that the house plants are not in the areas where she goes, no bleach is used to clean the floors etc.

I also bring them her detergent (no fragnance) and organic oils I use.

The being sick/smoking/perfume issue is a tougher one. I am lucky (or unlucky, depending on how you look at it)in a sense that we don't have big family, so I can actually call them up some time in advance and remind that we will have to reschedule if one of them is sick.

To deal with smoking I just make sure that when people come to my house they go outside to smoke and try to keep my daughter at a distance when they come back. And I keep the air purifier running all the time. Of course this is just a compromise between social life and CF but since here in France so many poeple smoke I will become a hermit if I want to avoid people who smoke completely.

I know it is difficult but you have to stand up for your child. Without being rude I would try to make them feel that they can affect her lifespan by their actions.

 

[ymikhale]

I am exactly like you. Mu daughter does not seem to have any allergies/asthma, but I apply the same rules as if she did.
<br />
<br />My daughter spends part of her summer at her grandparents' house. To help them take all that in, when I go there I bring a sheet called "general instructions " that I hang on the fridge and ask them to follow that. Since they love to spend time with her and don't see her that often, I tell them that as long as they follow my instructions I will be more than happy to have her stay over.
<br />
<br />Of course I cannot check everything they do while i am not there, but I know that the house plants are not in the areas where she goes, no bleach is used to clean the floors etc.
<br />
<br />I also bring them her detergent (no fragnance) and organic oils I use.
<br />
<br />The being sick/smoking/perfume issue is a tougher one. I am lucky (or unlucky, depending on how you look at it)in a sense that we don't have big family, so I can actually call them up some time in advance and remind that we will have to reschedule if one of them is sick.
<br />
<br />To deal with smoking I just make sure that when people come to my house they go outside to smoke and try to keep my daughter at a distance when they come back. And I keep the air purifier running all the time. Of course this is just a compromise between social life and CF but since here in France so many poeple smoke I will become a hermit if I want to avoid people who smoke completely.
<br />
<br />I know it is difficult but you have to stand up for your child. Without being rude I would try to make them feel that they can affect her lifespan by their actions.

 

[PlumPerfect]

We have had a few times of showing up and someone did not follow the rules and we left, or withheld exposure to our son depending on what it was. The people who care got the point that if you don't follow the rules you don't get to hang with Brandon. I have not went to several family events because of fire pits or other issues when asked why we weren't going I simply state that B can't be around yada yada and its unfair to him to have to be confined to an area so we just won't attending... certain people got the point..lol

I tried to remind people but still had issues so there is just a no tolerance policy if rules aren't followed then that person made a choice. The best you can do is maybe type out your rules and reasons why and send them out to all family members.

Brandon is very sensitive to all things.. Not sure if its an allergy thing or just super sensitive.. also they have recently done a study on third hand smoke ( you can Google it) and its bad for all children not just Cf children to be around.

I know you have to find a balance of making sure they are safe without putting them in a bubble.

Also I think it helps for them to see them sick and doing their treatments, you could make a video or montage to email everyone.

I also have a pretty sign that I have for in my house that states: Due to Brandon's illness please let us know if you have been smoking or have been ill. It goes on the front door if we are having a gathering and its just visible any other time.. I actually have it on the side of our fridge so My husbands friends see it right when they walk in from the back. The guys come over and work on their jeeps and some I don't know to well. He also lets them know the designated spot to smoke and if they were to smoke what rules they must follow if they are to enter our house.

I unfortunately think we will always have to have friendly reminders to people

 

[PlumPerfect]

We have had a few times of showing up and someone did not follow the rules and we left, or withheld exposure to our son depending on what it was. The people who care got the point that if you don't follow the rules you don't get to hang with Brandon. I have not went to several family events because of fire pits or other issues when asked why we weren't going I simply state that B can't be around yada yada and its unfair to him to have to be confined to an area so we just won't attending... certain people got the point..lol

I tried to remind people but still had issues so there is just a no tolerance policy if rules aren't followed then that person made a choice. The best you can do is maybe type out your rules and reasons why and send them out to all family members.

Brandon is very sensitive to all things.. Not sure if its an allergy thing or just super sensitive.. also they have recently done a study on third hand smoke ( you can Google it) and its bad for all children not just Cf children to be around.

I know you have to find a balance of making sure they are safe without putting them in a bubble.

Also I think it helps for them to see them sick and doing their treatments, you could make a video or montage to email everyone.

I also have a pretty sign that I have for in my house that states: Due to Brandon's illness please let us know if you have been smoking or have been ill. It goes on the front door if we are having a gathering and its just visible any other time.. I actually have it on the side of our fridge so My husbands friends see it right when they walk in from the back. The guys come over and work on their jeeps and some I don't know to well. He also lets them know the designated spot to smoke and if they were to smoke what rules they must follow if they are to enter our house.

I unfortunately think we will always have to have friendly reminders to people

 

[PlumPerfect]

We have had a few times of showing up and someone did not follow the rules and we left, or withheld exposure to our son depending on what it was. The people who care got the point that if you don't follow the rules you don't get to hang with Brandon. I have not went to several family events because of fire pits or other issues when asked why we weren't going I simply state that B can't be around yada yada and its unfair to him to have to be confined to an area so we just won't attending... certain people got the point..lol

I tried to remind people but still had issues so there is just a no tolerance policy if rules aren't followed then that person made a choice. The best you can do is maybe type out your rules and reasons why and send them out to all family members.

Brandon is very sensitive to all things.. Not sure if its an allergy thing or just super sensitive.. also they have recently done a study on third hand smoke ( you can Google it) and its bad for all children not just Cf children to be around.

I know you have to find a balance of making sure they are safe without putting them in a bubble.

Also I think it helps for them to see them sick and doing their treatments, you could make a video or montage to email everyone.

I also have a pretty sign that I have for in my house that states: Due to Brandon's illness please let us know if you have been smoking or have been ill. It goes on the front door if we are having a gathering and its just visible any other time.. I actually have it on the side of our fridge so My husbands friends see it right when they walk in from the back. The guys come over and work on their jeeps and some I don't know to well. He also lets them know the designated spot to smoke and if they were to smoke what rules they must follow if they are to enter our house.

I unfortunately think we will always have to have friendly reminders to people

 

[PlumPerfect]

We have had a few times of showing up and someone did not follow the rules and we left, or withheld exposure to our son depending on what it was. The people who care got the point that if you don't follow the rules you don't get to hang with Brandon. I have not went to several family events because of fire pits or other issues when asked why we weren't going I simply state that B can't be around yada yada and its unfair to him to have to be confined to an area so we just won't attending... certain people got the point..lol

I tried to remind people but still had issues so there is just a no tolerance policy if rules aren't followed then that person made a choice. The best you can do is maybe type out your rules and reasons why and send them out to all family members.

Brandon is very sensitive to all things.. Not sure if its an allergy thing or just super sensitive.. also they have recently done a study on third hand smoke ( you can Google it) and its bad for all children not just Cf children to be around.

I know you have to find a balance of making sure they are safe without putting them in a bubble.

Also I think it helps for them to see them sick and doing their treatments, you could make a video or montage to email everyone.

I also have a pretty sign that I have for in my house that states: Due to Brandon's illness please let us know if you have been smoking or have been ill. It goes on the front door if we are having a gathering and its just visible any other time.. I actually have it on the side of our fridge so My husbands friends see it right when they walk in from the back. The guys come over and work on their jeeps and some I don't know to well. He also lets them know the designated spot to smoke and if they were to smoke what rules they must follow if they are to enter our house.

I unfortunately think we will always have to have friendly reminders to people

 

[PlumPerfect]

We have had a few times of showing up and someone did not follow the rules and we left, or withheld exposure to our son depending on what it was. The people who care got the point that if you don't follow the rules you don't get to hang with Brandon. I have not went to several family events because of fire pits or other issues when asked why we weren't going I simply state that B can't be around yada yada and its unfair to him to have to be confined to an area so we just won't attending... certain people got the point..lol
<br />
<br />I tried to remind people but still had issues so there is just a no tolerance policy if rules aren't followed then that person made a choice. The best you can do is maybe type out your rules and reasons why and send them out to all family members.
<br />
<br />Brandon is very sensitive to all things.. Not sure if its an allergy thing or just super sensitive.. also they have recently done a study on third hand smoke ( you can Google it) and its bad for all children not just Cf children to be around.
<br />
<br />I know you have to find a balance of making sure they are safe without putting them in a bubble.
<br />
<br />Also I think it helps for them to see them sick and doing their treatments, you could make a video or montage to email everyone.
<br />
<br />I also have a pretty sign that I have for in my house that states: Due to Brandon's illness please let us know if you have been smoking or have been ill. It goes on the front door if we are having a gathering and its just visible any other time.. I actually have it on the side of our fridge so My husbands friends see it right when they walk in from the back. The guys come over and work on their jeeps and some I don't know to well. He also lets them know the designated spot to smoke and if they were to smoke what rules they must follow if they are to enter our house.
<br />
<br />I unfortunately think we will always have to have friendly reminders to people
<br />

 

[petnurse]

Our son is only 7 months, but if we have a family event (most people remember), but I will usually send out a friendly email reminder. As far as smoke, we have a zero tolerance. No one who smokes is allowed to hold him at all (3rd hand smoke). We won't even come into your home if you smoke there at all. We have recently had to disconnect from my husband's father due to him being unbending and ignorant about CF. Good luck!

 

[petnurse]

Our son is only 7 months, but if we have a family event (most people remember), but I will usually send out a friendly email reminder. As far as smoke, we have a zero tolerance. No one who smokes is allowed to hold him at all (3rd hand smoke). We won't even come into your home if you smoke there at all. We have recently had to disconnect from my husband's father due to him being unbending and ignorant about CF. Good luck!

 

[petnurse]

Our son is only 7 months, but if we have a family event (most people remember), but I will usually send out a friendly email reminder. As far as smoke, we have a zero tolerance. No one who smokes is allowed to hold him at all (3rd hand smoke). We won't even come into your home if you smoke there at all. We have recently had to disconnect from my husband's father due to him being unbending and ignorant about CF. Good luck!

 

[petnurse]

Our son is only 7 months, but if we have a family event (most people remember), but I will usually send out a friendly email reminder. As far as smoke, we have a zero tolerance. No one who smokes is allowed to hold him at all (3rd hand smoke). We won't even come into your home if you smoke there at all. We have recently had to disconnect from my husband's father due to him being unbending and ignorant about CF. Good luck!

 

[petnurse]

Our son is only 7 months, but if we have a family event (most people remember), but I will usually send out a friendly email reminder. As far as smoke, we have a zero tolerance. No one who smokes is allowed to hold him at all (3rd hand smoke). We won't even come into your home if you smoke there at all. We have recently had to disconnect from my husband's father due to him being unbending and ignorant about CF. Good luck!